dataMSA©

Global Data Collection for Multiple System Atrophy

copyright dataMSA 2014

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dataMSA
Worldwide data collection
for Multiple System Atrophy
USA
info@datamsa.com

dataMSA Survey for Multiple System Atrophy

Summary Report 2014-2019

5 Year Survey Period: 03/2014 - 03/2019

Survey Closed: Number of Participants: 832

Participants' responses are unabridged, unedited.

The material presented may be reproduced for the purposes of education and research

with appropriate citation to dataMSA

No fees or revenue in any form may be generated, charged or collected for/from this material.

Background Information:

In which country/region does/did the individual reside?

Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont	39	4.7%
Region II: New Jersey, New York, Puerto Rico, Virgin Islands	40	4.8%
Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia	50	6%
Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, N/SCarolina, Tennessee	106	12.8%
Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin	98	11.8%
Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas	76	9.2%
Region VII: Iowa, Kansas, Missouri, Nebraska	31	3.7%
Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming	14	1.7%
Region IX: Arizona, California, Hawaii, Nevada, Trust Territories	53	6.4%
Region X: Alaska, Idaho, Oregon, Washington	48	5.8%
Region XI: Canada	38	4.6%
Region XII: Central America	2	0.2%
Region XIII: Asia	15	1.8%
Region XIV: Africa	9	1.1%
Region XV: South America	1	0.1%
Region XVI: Antarctica	1	0.1%
Region XVII: Europe	86	10.4%
Region XVIII: Australia (continent), New Zealand	72	8.7%

Diagnosis Data:

At what age was the individual diagnosed with MSA?


20-25	0
26-30	1
31-35	3
36-40	11
41-45	28
46-50	75
51-55	158
56-60	179
61-65	180
66-70	106
71-75	63
76-80	16
80 or older	9

20-25	0	0%
26-30	1	0.1%
31-35	3	0.4%
36-40	11	1.3%
41-45	28	3.4%
46-50	75	9%
51-55	158	19.1%
56-60	179	21.6%
61-65	180	21.7%
66-70	106	12.8%
71-75	63	7.6%
76-80	16	1.9%
80 or older	9	1.1%

If the individual's diagnosis of MSA was not administered by a neurologist, please state how the diagnosis was formed:

At Vanderbilt by Italo O Biaggioni MD( Clinical Pharmarcology)

MRI and other tests

By just looking and DATSCAN

by neurologist

4 years observation

REBECCA'S TRIAL SURVEY ONLY. DELETE

Electro physiologist GP, MD, OD Will be going to Vanderbuilt for confirmation Nov 2014

He was yet to be confirmed MSA-P patient, autonomic test left undone, before he died.

I also have had Epilepsy since age of 5. was first diafnosed by a doctor I seen at a MS clinic.Been seeing Neurologists all my life.

My general doctor said "this May be MSA" I'm currently waiting to see a neurologist with MSA experience.

A Physician

Because so little is known in Australia about this disease, it was through my dogged determination as a sister to search for answers & clues that I came across the sites MSA Awareness, Multiple System Atrophy Coalition & MSA Trust UK. The last 2 Neuro's were very non-committal with my suggestion that it could be MSA & up to 7 weeks ago when Maureen passed away her Neuro was still sitting on the fence as to what she had. Maureen ticked every box bar NOH & erectile dysfunction.

N/A

I have cerablum atophy but doctor thinks I have MSA from some of the symptons I have

Sweat test, vertical table test, CT scans - Mayo Clinic.

Our GP diagnosed it after I complained that the consultants took a very narrow view of their own specialty and did not look at the whole picture

MRI and symptom Review by neurologist.

She stayed in hospital in the research section for 6 months before they found the answer

Cleveland Clinic, Multiple doctors, starting with her Oncologist in the Brain Tumor Institute, followed by several specialists at the Mellen Center, and finally by the movement specialists.

Went to mayo clinic after 3 and half years of being told it was parkinsons.

My brother's best friend since university is a geriatric specialist in Virginia. He was the one who actually told us about MSA after hearing of dads symptons for two years..

Initial symptoms stumped neurologists dating back to mid-2000s. Finally, in June 2012 came a diagnosis of early-onset Parkinsons. Symptoms rapidly advanced, didn't respond to drugs. In September 2014, same neurologist from 2012 changed diagnosis to MSA following performance of a sweat test, tilt-table test and MRI.

Had my primary doctor work wiith me and many specialists to remove and get closer to a diagnosis

I diagnosed MSA through research from my symptoms. Confirmed after seeing two other neurologists

a ms specialists at cleveland clinic

Proessive Cerebral ataxia

You first neuropathy and then them MSA

By my Pcp

Neurologist diagnosed me

Initially tentatively diagnosed by cardiologist and referred to neurologist for further evaluation.

MRI Scan. Local GP told her it was thought to be MSA, but he hadn't come across it before. We didn't want to wait for a prolonged length of time on the national health service so we opted to go private and met with a Neurologist who confirmed the diagnosis.

Testing was also done by a neuro psychologist

we always questioned the PD diagnosis based on symptoms, signs and progression but were always told everyone progresses differently. Not until he was wheel-chair bound and unable to move his arms/hands did we get a diagnosis of MSA

His neurologist thought it had to be MSA as his symptoms were so progressive,so she sent him to see Dr. Wilmot at Emory in Atlanta. He is the Ataxia specialist in this area,he was certain it is MSA.Within a year he was in a w/c with all the other classic symptomsHe is entering his 7th year and close to helpless.

My second Endocrinologist reviewed my history and diagnosed Probable MSA. My third Neurologist confirmed her diagnosis and after further testing he placed me in the MSA-C camp.

As he has a pacemaker, he couldn't have an MRI, so just symptoms , eg: high/low bp, gait,balance, Slight resting tremor in right hand, impotent, etc

Initially dx as Parkinsons, then Parkinsonism, the Parkinsons plus before MSA dx. Consultant in Elderly Medicine eventually diagnosed after I googled symptoms and asked if it was MSA.

I had done research on REM sleep disorder & found a link to something about MSA. It was a perfect picture of my husband. That was about a year before he was diagnosed.

It was first administered by a neurologist then he individual visited the Mayo Clinic for confirmation

MRI......rapid progression....symptoms right on target.

Neurology Specialized centre

Diagnosis was accomplished by a neurologist.

Neurooncology Parkinson's movement disorder

ER Doctor....general practitioner....said the name Shy Dregar

Multiple specialists and PCP

Cerebell ataxia

Prof. Maek Solms . Head of UCT's neuro department

Internist diagnosed Shy Dragger

A kidney specialist

By a cardiologist that referred my husband to Vanderbilt hospital in Nashville Tennessee

MRI in2013 showed normal pd MRI in2016 showed cerebelum and pond shrunk cause of cell death

By a geriatrics doctor after patient admitted to hospital due to a fall at home. The neurologist had previously diagnosed, stroke, then Parkinsons and then finally Alzheimers, so thr geriatric doctor was consulted and believed that something else was going on. He had seen MSA once before so conducted tests and formed the diagnosis.

Neurologist

My son was not diagnosed until after his death when his brain and spinal cord was autopsid.

Final dx determined by an ANS specialist

Self diagnosis via internet

cardiologist had tests run & sent to neurologist

I self diagnosed the condition initally then was confirmed 6 months later by my PD care specialist who reviewed my symptoms

Seen neurologist, confused about making proper diagnosis. Stuck between Parkinson’s or dimentia but missing a few traits of both. Referred to another neurologist who is more specialized in the area. Family doctor believes it is msa. Sending to specific doctor for a formal diagnosis. Seems to meet almost every symptom of msa.

Fainally a PET scan

I spent a month in the hospital in horrible pain the drs couldn’t explain or control. Colon not properly working and found my gall bladder to be functioning at 30%. I failed the tilt table test. I spent days with BP dropping from 60/30 and raising to 200/160. First diagnosed with dysautonomia. Later a neurologist that had at one time been in charge of the MSA study at UAB was brought in for consultation. He ran extra tests and told me I had MSA with ataxia. I refused to go to a nursing home which was highly requested since I live alone and have no support system. I went home but it becomes more difficult for me as time goes by. Moved to Florida because lack of transport and my specialist wasn’t returning to work. Due to fact been diagnosed with several auto immune diseases many years ago I am having hard time with new dr recognizing MSA. His words were “ if you had that you would already be in the ground”.

Geneticist was also involved in diagnosis after compiling urology and neurology findings.

The diagnosis was based on a dat scan

Mri

Rheumatologist and cardiologist to begin with

Patient diagnosed self and confirmed but the two neurologists

If the individual was diagnosed with conditions/illnesses prior to receiving a diagnosis of MSA please state the condition(s)/illness(es):

Parkinsons

Parkinson's

Parkinson’s

Parkinson's Disease

Parkinson

Parkinson's disease

Parkinsons

Ataxia

parkinsons

Cerebellar ataxia

Diabetes

Orthostic Hypotension

Ataxia, pre Parkinson's syndrome, slurred speech, vasovagal response, bowel and bladder dysfunction, rem behavioral disorder, dyspahgia, tremors, anxiety, hemochromatosis, hypertension, hypotention, low testosterone, falling, impaired motor skills, dystonia,

Heart disease

Early onset parkinsons

Autonomic neuropathy

Bi-polar disorder, MS, Parkinsons, Parkinsons plus, Spino Cebeullar Degeneration.

Cancer waldenstroms

Parkinsonism

Pernicious anaemia

Narrowing of spinal cord

Parkinson s

Depression, High blood presure

PSP

Parkinsons disease

He was diagnosed with Parkinson's Disease in 2001. In 2008 after having done Internet research, I questioned the neurologist about the diagnosis. He agreed my husband had MSA and said he thought we had discussed that already.

Morbus Parkinson

Depression, Alzhemiers and after seeing a psycotherapist he was diagnosed with Frontotemporal Dementia

Gastroparesis

Parkinson disease

Cerebellar Ataxia

Late onset cerebellar ataxia

Parkinson

Parkinson’s Disease

Parkinson’s

Ataxia

Low blood pressure

Rheumatoid Arthritis

Bipolar Poor vision requiring glasses Pulled shoulder muscle Depression Dehydration Lack of water, salt & exercise POTS

Prostate cancer.

Hard to say since he sought help from three neurologists for the tremor in extremities. Parkinson's tremors started at age 46. Within the second year, the low blood pressure and urology problems and difficulty speaking began.

Balance, breathing, swallowing problems

dizziness, lightheadedness. falling down. bladder control, staggered walking

Nesdioblstosis

Syncope, falls. Orthostatic Hypotension

Blood pressure problems Gastrointestinal problems Gait changes

COPD, Emphysema, CAD, S/P MI, CABG, cardiomyopathy, respiratory insufficiency, CHF, Ca of Prostate In remission, recurrent rectal bleeding, post radiation colitis , Obstructive Sleep Apnea, cardiac arrhytmias, permanent pacemaker and defibrillator

Balance & Gait issues Vision issues Tremors

High Blood Pressure ED..

Inner ear balance issue and was told it would go away.

Parkinsonism secondary to cardiovascular disease ot the heart and brain and another Parkinsonism plus

REM Sleep Disturbance, Gait Disturbance

Spinal Stenosis

possible stroke

Yes, he was diagnosed with Parkinson's first. He did very well park. Meds. Only later to go a different path and had another MRI to find the MSA present. His Dr. Was Dr.Stewart Factor of Emory in Atlanta. He is the head of neurological,movement disorders.,My husband had symptoms on both sides of Parkinson's.

A nerve inflamtion, then parkinson.

Dysautonomia, POTS, IST 2003 via tilt table test and holter moniters Fibromyalgia 1989 PTSD 1998 Pernicious anemia 2006 Iron deficiency anemia treated by IV iron infusions 2008

Ageing Parkinsons

High Blood Pressure

overactive bladdder bladder retention issues possible ibs ( due to constipation)

They told her it was frozen shoulders and bladder prolapse which she had surgery for where they performed a hysterectomy which didn't help we her family knew there was something more serious going on and insisted her doctor refer her to hospital.

hypothyroidism urinary urgency/ frequency and then retention orthostatic hypotension

1. "You have either lupus or MS, and we should know once you check 'one more box' that will land you in one or the other." 2. "Parkinsonism"

seizure, essential tremor, cervical dystonia plus had Freidricks Ataxia test

Diabetic for 12 years,but he maintained pretty well almost all the years.

Pacemaker, seizure (uncontrollable), phycological problems

Enlarged prostate Irritable bowl Urinary retention Urinary incontinence

Possible mini-strokes, memory loss, orthostatic hypotension, general anxiety disorder, depression, panic attacks, dizziness, lightheadedness, benign paroxysmal positional vertigo, arthritis, kidney stone, ruptured disk with nerve involvement, enlarged prostate, overactive bladder, chronic anemia, obstructive sleep apnea, REM sleep disorder.

Low heart beat - pacemaker Low blood pressure, dropping when standing Balance & walking issues Hand shaking

Everything i always was told it was either a symptom of having seizures or a side effect of a medication I was taking.

Dysautonomia, Syncope, Pre-Syncope. Also probably unrelated. PTSD, Dissociative Identity Disorder, Hashimotos, Pernicious Anemia, Asthma, SVT, iron deficiency anemia, TMJ

Parkinsons Disease in 2007, MSA in 2011

Prostate Cancer Postural Hypertension Irritable Bowel Syndrome Charcot-Marie-Tooth disease

Parkinsons and Parkinsons Plus

Cerebellar degeneration

Postural hypotension Mental illness Neuropathy Headaches Dry eye Memory issues Bladder issues Depression Irritable bowel syndrome

Complex regional pain syndrome type 1

dysuria

Parkinson's & Lou gehrigs

Early onset Parkinson's with microscopic colitis.

Essential tremor, Parkinson's

Coronary Artery Disease Parkinsonism

1. No problems/illness could be found after MRI / CT scan / x-ray. For 2 years she was told there was nothing wrong with her other than possible muscular discomfort/arthritis?????? 2. For 2 years she was dx & treated for Parkinson's Disease

Ataxia. Lost of balance, clumsiness, lost fine motor skills.

Diabetic

Sleep apnea, paralyzed vocal chord, dropped bladder

Lyme Disease, Parkinson's Disease

Lyme disease He was tested for MS, Ataxia, ALS Parkinson's Disease

Parkinson's Disease, Familial Tremors

Neurogenic Bladder

Hyperlipidemia , atrial fib

Parkinsons.

cerablum atrophy

Orthostatic hypotension, Autonomic System Failure, Mild Dementia, Peripheral Neuropathy of the lower extremities. He also saw bright flashes of light for which there seemed to be no diagnosis.

parkinsons, Coronary Heart disease. Heart attack 1991, pacemaker, defibrillator implant, diabetes type II, Ongoing neuropathy more serious than diabetic neuropathy should be, PTSD from Vietnam

Sleep Apnea Neck pain Inability to walk with Back pain/surgery Parkinson's Parkinson's plus

Other

Symptoms:

At what age did the individual first notice symptoms, later attributed to MSA?


20-25	3
26-30	4
31-35	9
36-40	25
41-45	62
46-50	135
51-55	174
56-60	187
61-65	130
66-70	65
71-75	23
76-80	5
80 or older	2

20-25	3	0.4%
26-30	4	0.5%
31-35	9	1.1%
36-40	25	3%
41-45	62	7.5%
46-50	135	16.4%
51-55	174	21.1%
56-60	187	22.7%
61-65	130	15.8%
66-70	65	7.9%
71-75	23	2.8%
76-80	5	0.6%
80 or older	2	0.2%

Please indicate the first/earliest symptom(s), which caused the individual to seek diagnosis:

Neuropathy (numbness, tingling in extremities)	134	16.2%
Excessive Neuro-Response (jumpy reflexes)	53	6.4%
Difficulty Walking	330	39.9%
Impaired Balance	451	54.5%
Fainting	125	15.1%
Falling	270	32.6%
Unstable Blood Pressure	222	26.8%
Dystonia (muscle spasms/ rigidity)	118	14.3%
Neuro-Motor Freeze (temporarily unable to move at all)	51	6.2%
Myalgia (muscle pain)	92	11.1%
Tremors in Extremities	149	18%
Impaired Fine Motor Skills	214	25.9%
Head Droops Down or To One Side	38	4.6%
Dry Eyes	58	7%
Teary Eyes	26	3.1%
Impaired Vision	74	8.9%
Eye Fatigue	35	4.2%
Optic Nerve Damage	3	0.4%
Difficulty Swallowing/Choking	34	4.1%
Excessive Coughing	34	4.1%
Dry Mouth	54	6.5%
Overly Moist Mouth	17	2.1%
Difficulty Breathing	43	5.2%
Impaired Speech	169	20.4%
Digestive Disorder (diarrhea, constipation)	131	15.8%
Excessive Gas/Bloating	39	4.7%
Irregularity	53	6.4%
Impaired Bowel Contol	61	7.4%
Impaired Bladder Control	246	29.7%
Impotence	203	24.5%
Chronic Fatigue	129	15.6%
Insomnia	66	8%
Impaired REM Sleep Cycle	165	20%
Confused Thought/Cognition	77	9.3%
Impaired Memory - Short, Intermediate, Long Term	77	9.3%
Inappropriate Emotions (crying, anger, etc)	75	9.1%
Excessive Reaction to Minor Stressors	57	6.9%
Chronic Headaches	63	7.6%
Depression	110	13.3%
Anxiety	96	11.6%
Suicidal Ideation/Thoughts	24	2.9%
Attempt(s) at Suicide	6	0.7%
Chills/Sweating/Overheating	94	11.4%
Rashes, Dry Skin, Itchiness	42	5.1%
Puffiness Under the Skin	13	1.6%
Other	142	17.2%

Please indicate all symptom(s) which the individual experiences/experienced since receiving a diagnosis of MSA:

Neuropathy (numbness, tingling in extremities)	374	45.7%
Excessive Neuro-Response (jumpy reflexes)	296	36.2%
Difficulty Walking	750	91.7%
Impaired Balance	765	93.5%
Fainting	256	31.3%
Falling	635	77.6%
Unstable Blood Pressure	562	68.7%
Dystonia (muscle spasms/ rigidity)	443	54.2%
Neuro-Motor Freeze (temporarily unable move at all)	350	42.8%
Myalgia (muscle pain)	337	41.2%
Tremors in Extremities	386	47.2%
Impaired Fine Motor Skills	656	80.2%
Head Droops Down or To One Side	328	40.1%
Dry Eyes	250	30.6%
Teary Eyes	179	21.9%
Impaired Vision	368	45%
Eye Fatigue	213	26%
Optic Nerve Damage	38	4.6%
Difficulty Swallowing/Choking	438	53.5%
Excessive Coughing	198	24.2%
Dry Mouth	249	30.4%
Overly Moist Mouth	184	22.5%
Difficulty Breathing	278	34%
Impaired Speech	632	77.3%
Digestive Disorder (diarrhea, constipation)	532	65%
Excessive Gas/Bloating	162	19.8%
Irregularity	268	32.8%
Impaired Bowel Control	304	37.2%
Impaired Bladder Control	590	72.1%
Impotence	380	46.5%
Chronic Fatigue	397	48.5%
Insomnia	231	28.2%
Impaired REM Sleep Cycle	377	46.1%
Confused Thought/Cognition	310	37.9%
Impaired Memory - Short, Intermediate, Long Term	305	37.3%
Inappropriate Emotions (crying, anger, etc)	313	38.3%
Excessive Reaction to Minor Stressors	231	28.2%
Chronic Headaches	130	15.9%
Depression	379	46.3%
Anxiety	293	35.8%
Suicidal Ideation/Thoughts	74	9%
Attempt(s) at Suicide	9	1.1%
Chills/Sweating/Overheating	321	39.2%
Rashes, Dry Skin, Itchiness	260	31.8%
Puffiness Under the Skin	89	10.9%
Other	183	22.4%

Please indicate events which cause/caused the individual's MSA symptoms to worsen?

None	82	10.3%
Exposure to heat	299	37.5%
Stress	441	55.3%
Fatigue/exertion	441	55.3%
Lack of sleep	371	46.5%
Diet	111	13.9%
Medication	148	18.5%
Loud noise	139	17.4%
Bright or pulsing/flashing light	113	14.2%
Confusion	119	14.9%
Depression	147	18.4%
Other	171	21.4%

Please list other events which cause/caused the individual's symptoms to worsen:

Infections

After sleeping or sitting for long periods of time I'm barely able to move.

common colds, stomach flus, weather fronts

None. They simply progressed with time.

Not being able to rest often throughout the day or night.

Exercise

Anger House/Yard work Stooping or bending Taking Fludrocortisone

Progression of MSA

medicarion seems to be managing very well symptoms and minimizing some daily issues

Extreme warm temperatures

Warm or chilly temperatures

It seems strange but every time I've been on holiday I've gotten worse and ended up in hospital

Meds needed to be regulated all the time., diet depends on his bowel movements. Heat,seemed to make him weak. Depression, and fatigue because he could not do the things he use to do and his mind said he could but his body would not respond.

Had a appointment with Neurologist, Dr. Novak of Worcester. He put me on Levidopa and Carbidopa. I had no improvement and stopped taking it, not knowing that I wasn't supposed to stop taking it abruptly. Because of this, I fell,and was hospitalized and was found to have a UTI infection and severely dehydrated. I feel that because of this, I had to rely more on the walker, unable to walk on my own. I also feel that these two drugs had a profound affect on me and caused me to progress in my disease.

She found swallowing very hard but she had a very strong appetite and was hungry all the time even after eating which wasn't normal for her

Seems that when the diet is high in carbs etc tends to do worse. Sitting for excessive time alcohol

he has worsen since his diagnosed 4years ago

Anticipation of any event outside normal routine, such as doctor's appointment, visit from relatives, trip to the store, etc. Before the event he is weak, his blood pressure is low and he can't think. While attending such events may be stimulating at the time, he tends to exhibit extreme fatigue afterwards.

medications taken for seizures,seizures menstration time of month

I would say any shift in temp, routine, sleep, travel, crowds, that will set me back, to Bed and testing only for several days to a week.

death of close. friend. october. 2010 death. of. spouse. june. 2012 death. of father. october. 2013 arguments. with siblings over distribution of dads belongings (. I am co-executer)

When in a crowd or public event.

same as above

Unfortunately both my sister & her husband were in total denial re: this disease & therefore she never accepted physio/occupational/speech or any other therapy suggested to aid her progression & went downhill very quickly.

N/A

Heat

Emotional upset, eating carbohydrates or drinking alcoholic beverages. He began hitting things with the car and had a moving violation, so the family took his license. He studied the DMV driving manual 8 hours a day for months at a time, then tried to pass the test, failing 9 times. He could not figure out what lane to drive in and confused left and right maneuvers.

gets better as the day goes on, then worse near bedtime.

losing balance, uncoordination,unable tofocus leg or feet uncoordinated. unable to change position , nightmares,

His father was murdered in a robbery. My husband had to identify the body at the morgue which was a horrible experience. My husband never got over the death of his father, and although he was not diagnosed at the time, his symptoms got noticeably worse.

excess walk. over heat.

symptom worsen after one last fall

insufficient social activity insufficient planning things to look forward to like trips or events. feeling powerless

Mealtimes worsen OH

General decline over time, wheelchair bound now, poor diet, excessive nausea due to extreme dizziness ( like a motion sickness), afraid to eat because of same. Muscle wasting making even standing difficult .

First thing in the morning, I walk (even with a walker) like a drunken sailor, wavy path. It is several hours into the day before I can walk almost normal with the walker. I still periodically trip because I forget to concentrate on picking up my right foot. Right hand spasms and freezes in weird positions if I have a long (multiple course) meal. If I talk too much, my vocal chord tremors get worse and more uncoordinated with the lung spasms.

It was always bad.

when having an infections, usually urinary tract infections, his symptoms would worsen

Being alone, thinking about leaving my loved ones. Thinking about what this damn disease as taken already.

Exercise, missing meals,

alcohiol

weather

unfamiliar surroundings make balance issues worse

Anesthesia from surgeries & a bad fall which resulted in a large hematoma along with mom's older brother passing from Alzheimer's worsened symptoms

An antibiotic called iblex. For bladder infection. Caused patient to freeze and not walk..when taking sinemet. So changed antibiotic..

startle effect. over exertion, unfamiliar situations.

Night time Impatience

Unable to to eat until she had the pacemaker was put in, That was just in time! Bladder stopped working to.

Being hurried

Inability to exercise due to shortness of breath, inability to breath. Finally diagnosed with paralysis of vocal chords.

Falling, resulting in fractures. Also childhood-scoliosis gone haywire.

Stress and excitement seem to make the tremors more pronounced. The medication carbidopa levodopa is of little if any benefit.

He hates to travel in a car. It makes him very sick and nauseated.

Thinking about the things I cannot do any longer and crying a lot. Least little things that Upset me.

Bladder failed Colon failed Inability to speak and chew and swallow food

Medication received after a fall in 2011, during his stay at Ygeia Hospital: Akineton/ Stedon/ Haloperidine. Daily a bottle of each during 6 weeks. Lack of food during that period . He lost his speech and ability to walk by himself after that.

Alcohol, heat, sun, food

Not being able to drive (last three years) has caused stress. I go out twice a month. I get Injection in my eyes (trying to stop bleeding) I didn't raise my hand to volunteer for either disease. We don't have public transportation. I do shake more if I'm around people I don't know. Not knowing what will happen next is hard.

Following stays at the Hospital or times when her routine or surroundings were altered.

People want to visit and he wants to see family and friends but he becomes over tired and over whelmed. He also wants to attend mass, has every Sunday for his entire life, but it is becoming too difficult.

Any time he is unable to move for long periods... staying in bed too long, sitting too long. Hospitalization & anesthetics are worst because they do not understand the DX and in most cases will not get him up to sit, stand or go to bathroom... saying he is too weak! Medications that contribute to weakness, i.e., statins, antibiotics, etc. Doctors not paying attention to medications prescribed for other things like cholesterol, that make MSA worse.

Have not noticed

When I'm told to hurry up....I can only move so fast and if I CAN'T MEET YOUR EXPECTATIONS, WELL BASICALLY, THAT'S TO BAD BECAUSE THAT IS NOT THE WAY TO MOTOVATE ME..........

Numerous UTIs always affected him, amplified all other symptoms.

Hospitalization

We've seen that after a point of excersise, symptoms get worse, so we've been trying to find, along with the PT, his neurologist and his pulmonary specialist, when is the right moment to stop doing exercise (walking or playing soccer) because if he exceeds, everything goes crazy. And when I say everything, I really mean it: physically, emotionally and cognitively.

Lightheadedness and exhaustion

I'm not sure of specific events. Since done were trying to relate their msa to a major event.... Diagnosed with TB twice as a child and spent time in TB sanatorium. She thinks it was just allergies. Major wreck in her twenties. Complained of getting out of breath easily and that she might feel better if she had eaten right when she was younger. She still did everything including working outside of the home, taking care of family, teaching Sunday School, gardening, etc. it was just a statement she made. She rarely took any time off for being sick. She felt like her heart would sometimes skip a beat starting in her late forties. She passed out around the age of 65 and again in 70's. Heart hospital didn't find anything. At some point had some A fib. I think the diagnosis finally came after the pneumonia due to blood pressure fluctuations and difficulty breathing. I'm not sure when the dementia regarding short term started, but it may be age related. Dad noticed it. I will guess around 80 years. She is now 86 and some of long term memories are now confused. She also had a couple of falls in her sixties and seventies, but I'm not sure if it was related or if he tripped.

uTI infection, crowds, noise, sunlight, motion

Skipped medications. Stopping after exercising (walking), especially after an incline.

Chemotherapy for bowel cancer

not applicable

Standing too long, especially in one position Sitting too long without being able to shift much (at a talk)

From sitting to standing blood pressure drops, which causes her to feel dizzy/feel faint/sometimes fall over.

fatigue is the main symptom

overexertion - ie - going to a movie, even though in a wheelchair.

Anesthesia Pain meds

Possibly having a feeding tube inserted. He now has to be heavily sedated so that he can sleep. Started having hallucinations and seizure like, restless, confused behaviour.

More than 1 person or thing (TV/radio) to be talking. Frustration or irritation. Anger.

Not drinking enough water, excessive caffeine, Dehydration, alcohol intake. lower back pain & hip pain increase loss of balance and falling.

not being able to be verbally understood....

My Dad gets very tired and edgy at big family gatherings

General depression possibly as a result of decreasing ability to look after his 2 cats and later for someone to keep his 2 cats together rather than be separated before he would have to enter a nursing home. Also because of the condition being inevitably fatal and having been a strong, healthy and independent bachelor, he felt helpless and depressed as a result.

Haven't noticed a pattern. It is more like which symptom is going to be a problem today. Is it nausea or the dizziness from the orthopedic hypotension, or pain or ?

Long trips to appointments/pleasure trips, extended visits with guests, emotional stress

emotional triggers such as Birth or Death in Family,

Time

Dehydration

N/a

Aspirational pnumonia, multiple falls, multiple bladder infections (possibly due to catheder)

If we have company. Having people over seems to set him off.

Exposure to cold, not eating on schedule

Change of any kind.

pain

Crowds

My mother died in 2014, and over the prior six months I tried to care for her. I carried a great deal of guilt over her death, and I think the stress triggered some MSA symptoms, such as e.d. and urinary retention.

violent drops in BP during or after BM

stress of masking & 'performing' (pretending things are better than they are) in front of strangers or friends. After a visit, he will spend days recovering

Multi tasking Changes from routine

Other

If cycles are/were observed with regard to worsening of the individual's symptoms, what was the duration on the cycle?

less than 6 hours	44	14.3%
6-12 hours	38	12.4%
13-18 hours	8	2.6%
19-24 hours	15	4.9%
one to two days	81	26.4%
more than two full days	121	39.4%

If yes, what are/were the strategies/interventions that help(ed) reduce the individual's symptoms?

Diet	144	34.3%
Exercise/Physical Activity	246	58.6%
Physical Therapy/ Movement Therapy	260	61.9%
Accupuncture	27	6.4%
Light Therapy	14	3.3%
Speech Therapy	172	41%
Supplements (please describe below)	71	16.9%
Socialization	129	30.7%
Games, Puzzles, etc.	75	17.9%

Please list other strategies/interventions that may help/have helped reduce the individual's symptoms:

Rest

Takes Northera, and carbidopa/Levodopa

Occupying my mind with another activity while watching tv. The more I keep my mind busy the less I focus on the pain.

None

Music, getting out of the house, meeting other people

Sleep

Meditation

CBD oil

Drinking 16oz bottle of water quickly while elevating legs. Taking salt supplements. Turning down air conditioner making home especially cold. Sitting or laying down. Bending over until dizziness subsided. Taking lots of various vitamin supplements. Cool rag on back of neck. Crying it out.

Liquid vitamins,bee pollen,green's,protein powder,chlorophly.

Water therapy in pool. Symptoms were reduced to a degree, but short term help.

Reduce family drama.....

medication/walking

Cannabis stopped the tremors

Warm therapy. Blankets and warm electric blankets. Sleeping a lot.

Resting

Avoid hot weather or cold weather.

COQ10 - Levodopa

Sleep

My father had a procedure where they drained fluid from his spinal cord which made his balance slightly better, for a while

Pool excerisessi

For a while fish oil helped ease the neuropathic pain in the soles of my feet. Since my last decline it does not. Compression stockings for pooling in feet and legs Compression belt for pooling in abdomen

Removal of causes of stress

Speech therapy Exercise therapy Socialization Rest

I am utilizing various integrative therapies. Biophoton therapy, QiGong, prayer, supplements, nutrition.Try to exercise as I can. Sleep helps if I am overtired. Also workign with LDN( low dose naltrexone)

Massage sodium bicarbonate tablets stretching

1. LSVT "Big" (for movement and LSVT "Loud" ( for speech a AND swallowing) 2. Yoga, and in particular, yoga-styled breathing in all I do. 3. I think my daily core strength exercises have been invaluable...noticing now as movement in decline but my core strength helps me do lots on my own still. 4. Things I do which I "think" help but hard to know for certain since I do so many different things: A. Gluten-free diet (following Dr. Perlmutter's "Grain Brain" book's guidance) B. Hyperbaric oxygen therapy (HBOT).....every six months, I do two weeks of 2X daily HBOT. C. Glutathione IV injection, and a B-12 shot...twice per week.

sleep and the symptoms really worsen after a 2 day dart tournament due to pain and fatigue

Reiki messages helped

Maintaining normalcy. There is usually a lot of laughter in this household, lots of family jokes and "messing" with each other. We joke about his symptoms and make him laugh. For instance when his walk is slow and unsteady my daughter calls him Speedy.

tried to keep watch on b/p control seizures with changeing dosages of meds to changing meds totally,watched if there was any type of paiiern to symptoms

Biotronik Evia Pacemaker resolved syncope, IV fluids resolve per syncope and dysautonimia for a few days

Keeping active, e.g. getting out of the house, interacting with outside world and interacting with other people. Laughing and being 'silly' Deep Brain Stimulation (DBS) has made a big difference with his movement. when we turn it off occasionally to 'reboot' his movement is far more limited.

Bedrest

Earlier, he was helped by Lee Silverman speech therapy and always by OT and PT.

Planning! Travel time, meals on time, meds on time, increased fluids, taking lots time to get ready for any event. No movies theaters.

relaxation reiki

Not waiting too long to start on puréed foods. Starting with milkshakes and smoothies as snacks to keep his strength up. Feeding with a straw and getting plenty of fluids.

Besides PT/MT pool exercises seem to help

After 2 hospitalisations for UTI's because the catheter wasn't cleaned properly a Supra Pubic Catheter was inserted which helped immensely.

N/A

Stay cool in summer

Uses iPod with music constantly

Taking less meds. Lots of exercise.

Ingested 1/8 tsp salt 4-5 times a day to raise blood pressure. Smoking marijuana improved balance and alleviated dizziness.

Ultrasound

Meditation living mindful excersizes

Quiet room with no noise except classical music to help muscles relax during periods of dystonia.

Sorry, I wish I could think of something that helped. Other then laughter, which probably helped his loved ones more then him, I cannot think of anything that helped relieve his suffering.

1.Acupressure 2.Pranayam 3. Marm Treatment.

Helping others. Creating awareness.

lCoconut oil Exercise Physiology

more veggies, green shakes, aqua hydration formula, herbal supplements, B-12

using CPAP (breathing help) lactulose syrup for the bowels yoga

Art, painting etc.

planning recovery time after an arduous day ketonic diet planning something to look forward to

Trialing Zofran 8mgs for nausea at the moment, but increased constipation because of it. Have trailed various other antiemetics to no avail.

Shorter meals more frequently during the day. Timer for talking on the phone (try to do this less than 15 mins at a time). Pacing myself when walking. Stopping to take very short (1-5 min) breaks and then resume.

I'm not sure how to answer that. It was just to suffer through the whole disease. Nothing but Faith in the Lord is all you can say.

the above are very good, but I haven't found anything that appears to slow progression

Massage, eating food high in sodium

Sleep Speaking with adult daughter's assisted with worry, anxiety & confusion.

vitamins a b c d e & Aqua drops

mobilising,socialising,

high doses Mg, St John's wort, chinese herbal medicine

drinking plain water before rising

Mom didn't have much pain until the latter stages of the disease....stretches, massage, & oral motor exercises helped to keep her moving & speaking longer...

Staying constant with activity. Extra activity causes problems for the next couple of days. Also increased symptoms before menses, ugh.

Having exercises in a hospital heated pool seems to help with keeping him moving...but is declining faster now and speech is getting worse even with speech therapy. Going into rehab private hospital for a couple of weeks helps check him out and gives us new ideas to keep him mobile and well..also good for respite for the carer.

none. Individual has one track mind.

Having a dog.

Cathters Pace ,maker

Carers taking more time so he isn't rushed. Listening to him so that his day can be structured around his meals and toilet needs, as they exhaust him.

Computer/Internet

Sleep.

Help with relieving stress quickly

treat the symptoms with medications

Taking Valium helped me and increasing the amount of exercising I do.

Doctor's care

IVIG

Q10, Ashwaganda ,Vitamins C,D,E, Cranberry, Turmeric

Chest massage improved the movement of phlegm.

Physical Therapy, Speech Therapy, exercise, equipment that help him move... getting up and getting in and out of car daily. The more he went out and got up and down and in and out of car, the better he was able to move

Scriph

ozone therapy.

Heat blanket

Pramirol helps my tremor and RLS

Vit E; Vit D; Multivitamin (Berocca) .Analgesics -Antidepressants-osteo arthritis supplement; arm patches for incontinence; iron supplement for anaemia and Vit. B12 injections from Generl Practitioner.

Keeping very well hydrated and don't skip meals

Glyconutrient supplement Oregano oil for UTI prevention Chiropractor

The main thing that we've used as a strategy is reducing time of playing soccer, maybe in 3 months he has gone only into 1/5 of the time he used to played. He used to walk everyday for 30 min and now he only does it maybe twice a week, of course accompanied and with his cane due to balance issues.

Medication.

Origin Point Method (similar to pressure point massage but different philosophy)

physical therapy

Pool therapy, music therapy Diazepam Mestinon

Massage, but only lasts a few hours

Coq10

I take all supplements recommended in Grain Brain by Dr. Perlmutter.

Relaxation and coenzyme Q10

Panadol (Panamax)

Other

Medications:

Has/Had the individual regularly taken any prescription medication prior to or after diagnosis of MSA?

no	129	15.9%
yes	682	84.1%

If yes, please list the prescription medication(s) taken regularly by the individual:

Antidepressants, sodium

Sinemet

Statins

Loivadopa

First Midodrine, now takes Northera and Carbidopa/Levodopa

Exforge, clonapin, wellbutrin, seroquil

Sinemet lodosyn Neupro Labetalol Synthroid prevacid Bentyl Flonase

baclofen pump clonazepam, tizanidine, amantadine, tamsulosin, fluoxetine, cialis daily

Mido drink Flonef Salt tablets

Insulin

B12injections Statins Omeprazole Vitamin b supplement Frolic acid

Midordrine Carbidopa/Levo Tabs Baclofen

Baclofen Sinemet Thicken up clear Mirtazapine Carbocisteine

Blood pressure, paxil for depression

I no longer remember those medications. They were all ineffective.

Vitamins & non-antibacterial meds

Madopar LT 250 mg 5 times/ daily madopar retard 250 mg/ night Cymbalta 90 mg as pain reduced Nitro-furantoin 50 mg

Botox for the dystonia None of the gastroparesis medications worked so stopped early on

Mididrine Florineff Velez's

Cilift - depression Rivotril - Parkinsonism Lyrica - Dystonia Doing self catheter

Too many

Modafinil Q10 ubidekarenon Tegretol Aminopyridine rasagaline Venlafaxine Cialis Viagra Vitaros

Gabapentin, lisnopril, metoprolol

Levadopa/carbadopa Amandine was Requip

Midrodrine 10mg 2x/day (stops working after 2wks) Fludrocortisone 1mg (never worked for me) Droxidopa aka Northera - 100mg really helps me

Sintmet

hrt patches, movicol, macrodantin

Carbodopa -levadopa Clonazepam .5 mg Florinef Quetiapine 25 mg Senna-plus tablet

Seniment

Madapor Domperidome Clonazepam

Sinemet for Parkinson's, meds for bladder.

Artane Cymbalta Valium

not here.. Personal request will send script info

florineff midodrine

Digoxin, albuterol, Pulmicort, tenormin, Prednisone,Lopresor, , Imodium, Flomax , Singulair

Atacand Somac Cipramil Baclofen Madopar Clonazepam Motilium Ditropan Dulcolax drops Movicol Coloxyl Oroxine Vitamin D

Digoxin Albuterol Pulmicort Prednisone Singular Tenormin Imodium Lomotil Guafenasine Zomax Lipitor

lunesta 3mg po od

Sinemet Veneflaxion Omperozole Neupro patch Clonozapam Simvistatin

Various medication for high blood pressure since aprox mid-20's, various bouts with depression also various meds taken from 2001-2007..Medications after diagnosis of MSA include: midodrine,captopril,

Levodopa

Blood pressure meds Cholesterol meds

Imdur, minnax, somac, sinemet, Lipitor, Frisid, panadol osteo, sifrol, spriva, poly tears, nasonex, asasantin, endone., mirtazapine, baclafin, lyrica, Florinef, ventolin, fentanyl patches

Carbidopa/Levadopa

Coreg, Lasix, plavix, anti-depressents, cholesterol med, levothyroxin, estrogen,

syntroid

citalopram

Sinemet, midodrene, fludrocortisone

Carbadopa/Levadopa, cymbalta,,blood pressure meds.,a sleeping pill that worked for sleep and restless leg.,forgot,the names of the last two.,they worked very well.,I,would have to,look them up.,

Sinemet,mirapex, proamatine

Dexilant for GERD Ambien for REM sleep disorder Clonazapam for startle response , RBD sleep disorder Gabapentin for neuropathy Vyvanse to increase blood pressure

Fludrocortisone Betmiga

Topzole for gastric reflux

Various medications for high blood pressure since the mid eighties and medication for depression at different times.

The only med I was on was sinemet. I am slowly going off that and trying LDN.There has been alot of success with this reducing Parkinson symptoms. Something to look into...

Prolopa, Cialis, Nexam, Diclofenac, antidepression

synthroid lipitor (now stopped) nexium

Fludrocortisones Phamipexole Sertraline Diazepam Amitripyline Fiorinal

Metoprolol Fludro cortisone AlfuzosinHCC ER Sinemet Trazadone

clonazepam, baclofen, omeprazole, diclofenac, Spiriva, symbacort, ventolin, Tylenol 3

syndopa 125, urimax d, gemer ds 2, zevert md 24mg, rozaval 5, nuala e, delok 30, zinetac 150

Keppra - for seisures

Effexor Sinemet (started taking 2/21/14) Have tried many different meds

fludrocortisone acetate, 1mg., nortriptyline hcl 10mgs.,mestinon timespan 180 mgs.

All the Parkinson's meds and thyroid medication synthroid for graves desease

Alfuzosin (Uroxatral) 10. Mg qd Azilect .5 Mg qd Clonazepam (Klonopin) .25 Mg qd Clopidogrel (Plavix) Finasteride (Proscar) Fludrocortisone (Florinef) Levothyroxine (Synthroid) Namenda Myrbetriq Paxil Pyridostigmine (Mestinon) Sertraline (Zoloft)

Zoloft Pristine Trazodone Flexeril Midodrine Lorazepam Fludrocortisone toviaz

felbatol-600mg tid lamotrigine100mg bid clonazepam0.5mg ai bedtime

Lexapro, levothyroid, B12 injections, IV Iron Fereheme, IV Fluids, klonopin, trazodone, skelaxin, max all, xoponex

Stalevo Sinemet Florinef Thyroxine Effexor

Lovastatin

morphine sulfate; lyrica; levothyroxine; zolpidem; amitriptyline; Flomax; carbidopa/levodopa;

Sinemet, amantadine, nexium, clonazepam, midodrine, baclofen, zoloft, B-12 injections

Mestinion Lyrica Requip Pinpoint Vicodan

Baclofen, cymbalta, neurontin, klonapin, namenda, trazadone

2.5 mg midodrine 4 times daily

Eldopa

sinemet azilect

Metformin, carbo levodopa, and a blood pressure med I can't recall.

Arimidex, levodopa, domperidome

Sinamet, Midodrine, Pyridostigmine, lipitor, bactrim,aspirin

Remeron, lexapro, antibiotics,

Endep Sinemet Sifrol Durogesic patch (Morphine)

Flomax, antidepressant, ledopea?, and a drug to raise blood pressure

Maintenance Pills: Pravastatin Sod. 80mg HydrochloroThiazide 50mg Omeprazole 20mg Diovan 160mg Amlopidine Besylate 10mg

Diabetic meds including insulin, metformin

Ativan

Too many to list. Individual is totally dependent and resides in a subacute care facility having had a colostomy and Foley catheter in June 2011 and a tracheostomy in December 2013.

Sinemet, dopamine

Antibiotics for Lyme Disease

Carbidopa Levidopa

Atenolol,simvistatin,flomax

carbadoba levadopa

Midodrine

Metformin, Docusate sodium, tylenol, carvedilol, gabapentin, flimiprimide, sennosides, baclofen, pradaxa, sertraline, furosemide, spironolactone, lantus, finasteride, vicoden, miralax, metolazone, lactulose This is all his meds which include coverage for heart issues and diabetes.

Metformin, atorvastatin.

depression meds do not know names of others

Clonazapan

none cabdopa-levodopa - no help

Celexia which he stopped taking all at once rather than a step down on his gp's advice cholesterol and high blood pressure drugs for 20 plus years

Other

Has/Had the individual regularly taken any over-the-counter medication(s) prior to or after diagnosis of MSA?

No	405	51.3%
Yes	384	48.7%

If yes, please list the over-the-counter medication(s) taken regularly by the individual:

Ibuprofen

Advil

Pain medication

Tylenol

Ibuprofen

Omerprazole 20mg 1 per day (aspirin 81 mg 1 per day (Calcium/with vitamin D, 600 mg 1 per day (Milk of Magnesia 500 mg 3 per day

Aspirin

by doctor suggestion folic acid vitamin B-12, D, E, Flaxseed oil, Aspirin

Vitimens

Aspirin

Zyrtec allergy pills Melatonin

Asprin

See above

Parkovit, Vitamine Mix content --b12, folat, d3

Multi Vitamins

Mucinex

As above except rasagiinr

Fish oil, Vit D, CQ10, Vit B12, Vit B complex, panadol osteo, occasional panadeine (10mg.) lutein,

Excedrin

Melatonin

Low dose aspirin, senna

Aspirin Various diet pills for energy 5 hour energy shots Many various vitamins/supplements

Vitamin C Vitamin D Ibuprofen q Q10

Guafenesin, Sudafed,

Guafenesin Sudafed Aleeve

stool softener miralax

Stool softeners Psycillium Husk Fiber Men's multiple-vitamin Vitiman D3 1000 IU Aspirin 325mg Melatonin 5mg

aspirin,ibuprofin I'm sure there others I just cant think of them presently..

COQ10

Aleeve Motrin Aspirin

Multi-vitamin fish oil

Echinacea, excedrin, vitamins,

benedryle sudafed

Aspirin Senna Papaya enzyme tablets

She suffered bad hay fever and sinus problems all her life and was always buying nasal inhalers like sudofed to try and breath better

vitamins coconut oil vitamin d/ca++

Advil Aspirin

COQ10 B12 and B6; D3; vitamin C; zinc; multi-vitamin; magnesium complex Niacinamide; acetyl carnitine; probiotic

syndopa 125, urimax d, gemer ds 2, zevert md 24mg, rozaval 5, nuala e, delok 30, zinetac 150

Prilosec

multi vitamin

Aleve (Naproxen) Ferrous sulfate (Iron) Immodium Florastore Multivitamine w/o Vitamins A&E Phazyme Vitamine B-12 Oral Vitamin D-3

bayer cildren asprin , stool softeners , different laxatives, eye drops, nasal sprays different pain meds

Advil, aleve, tums, pepto, excedrine

Rifampicin,ragaziline,citalipram

81 mg aspirin daily;

Mirolax

Anti diarrhea med Pain reliever Pain patch Multi vit Eye drops

Motrin, omeprezole

Tylenol arthritis, Advil

Coloxyl

Centrum Glucosamine/Chondroitin

CoQ10, Vitamin B Complex, Fish Oil, Vitamin E, Vitamin C, Vitamin D, Asprin 81 mg,

Prior to diagnosis Vitamins & Supplements, laxatives, stool softeners

Vitamins, Ibuprophen

Tylenol, Ibuprofen

Claritin

Stool softener.

Vitamin D Omeprazole Zyrtec

multivitamins, calcuim, vitD & 12, coq10

Vitamins,Tylenol

Viagra dilantin

Ferricure

Krill oil: multivitamins:cranberry tablets:

licorice (candy that keeps the blood pressure under control) Fibers (to keep the bowels going)

Paracetamol, ibuprufen

CoQ10 - 800mg daily from 2006 -2013

Miralax and Senokot to prevent bowel impactions AZO Standard when I get UTIs due to bladder retention.

ASA, Vit D

ibuprophen PM Omeg 3 Glutathione 4x per day

Vit E and D Magnesium

vitamins-vitamin C, multi vitamin, vitamin E

vitamin D,and C, Krill, and fortify

sleep aid, laxitive

glucosamine chondroitin lipoflavinoid vitamin D3 baby aspirin CoQ10

lazitives

Omeprazole 20 mg Ibuprofen 200 mg Melatonin 5 mg

insulin for type 1 diabetes

vitamin d. multivitamin

dulcolax

paracetamol as needed

Mom stayed on metanx which is a strong bcomplex vitamin along with the largest calcium vitamin you can buy due to pernicious anemia...I believe these helped keep her from getting common illnesses like colds or flu during her decline when I was ill & taking care of her.

Ibuprofen for pain, discontinued when started warfarin

Now on aspirin to keep blood thin and now takes vitamin d once a month as has osteoporosis..

variety of vitamins. since the 70s.

Culturelle Vitamins

Something for heartburn Something for his sleep to stop night terrors. Something for his blood pressure

Pain killers for headaches, muscle aches and pains. Vitamins and mineral supplements. Melatonin to help sleep issues.

cranberry flax seed oil fiber

Baby aspirin.

Vit C Miro-lax Ducalox Stool softener

Vitamin B12

B Complex, Grill oil, ubiquidol, manganese peroxide,

Coliria, Losec for his stomach, painkillers for lumbago e.g Mesulid.

Tylenol Advil Aspirin

vitamins, cherry extract for gout

Motrin, Tylenon.

Diabetes Medicine including Diabex and insulin

Glucosamine.

Other

Neurological Care:What is/was the nature of the neurological care the individual receives/received during these visits?

neurological consultation	555	71.4%
neurological assessment	578	74.4%
MRI	310	39.9%
CAT scan	155	19.9%
Other	99	12.7%

If 'Other" - please describe:

see above

Nerve conductivity test, spinal tap, 8 MRI, EEG, EMG

NCS test for testing numbness of hand and foot nerves

2-hour psycho-neuro exam, nerve conduction study

had uncontrolled seizures since age of 5. cannot find any causes.found out that epilepsy runs on fathers side of family. seizures were always worsened just before and during mensrtuation

He had deep brain stimulation (DBS) in 2010 when about 3 years after he was diagnosed with Parkinsons Disease. We see a psychiatrist together 1-2 a year to talk through issues. this was particularly useful when he was able to discuss that he had hypersexuality issues and was finding that he had been attracted to men. This had been quite distressing and combined with impulse control issues caused by both disease and medication meant that he had acted on this impulses. This was resolved when the medications where lowered but caused much distress to the family. He has botox quarterly to keep his eyes open

Neurologist always makes sure spouse sees her compassion and care - and gives hugs and comfort prior to leaving.

Botox shots to help with excessive saliva

Sleep study Saw a cardiologist bec of chest pain. Placed a stent in heart artery.

He was told to drink more water, and add salty foods to his diet

I am now on hospice so going to the Dr. less now.

Review of medication effectiveness Recording and assessing new symptoms Referrals for bloodwork and other tests twice a year Neuropysch testing every year for last 3 years

migraine headahes

DaTScan

Mom's 1st diagnosis was a benign tremor in 2007...she neurologist hopped for other opinions & ended up with a movement disorder specialist that diagnosed Parkinson's...meds weren't working but mom pursued options to fix her bladder issues & received a stimulator upon retirement in September of 2012..as we fought to bring her back from 2 surgeries in 2 weeks she wasn't getting stronger with rigorous therapy...a few months after surgery she had a bad fall that resulted in a fist sized hematoma...as she continued to decline we asked numerous questions with the PAs in her neurologist practice to which was answered you have Parkinson's....you're only guaranteed a visit with your specialist every 3 appointments...as soon as mom spoke Karen (Dr Karen Thomas)turned her chair around & for the 1st time didn't suggest therapy...she put her hands on our knees & said Ladies we're dealing with a whole other beast, this is MSA Type P not Parkinson's...we followed up with an MRI which showed beginning of hot cross buns common in MSA...she asked to bring in some interns so they could learn to spot the difference in their future patients....we never went back & mom was gone in about 6 months

extreme pain in wrist....upper left arm....legs

variety of medicines to treat symptoms such as bladder issues, REM disorder, depression, bowel difficulties.

Regular exams by general practice doctors

Admitted in hospital for observe

I get Botox for the tremors and to relieve the pulling of my head to the left

Adjust meds

EMG, Tilt Table Test

Immunoglobulin & Plasmaphresis for AAG

Lung

Our neurologist is the best thing we've had. He is excellent prepared, always making/working or research and besides he is a great human being: caring and asking about how are we coping with it. He is also the neurologist of my 2 only kids (one with TBI due to a ski accident and the other with epilepsy + sport concussion + TBI due to a physical assault at school). So he is helping me coping and preparing them for every next step. This was, we take care of the 3 of them, the best we can!

She hasn't been to a Neuton in several years. It is difficult to get her up to go to a Dr, and they really haven't helped.

Complete study, with electrodes, overnight in controlled environment, and report with explanation, examples, and findings.

adjustment/changes of medications

My brother, Tony also gets BOTOX injections for his ankle from a neurologist; every four months. It seems to help him with rigidity and spasms that kept him up at night.

Also tried Azilect no noticeable improvement so discontinued

Upon initial MSA diagnosis, neurologist visits were monthly for 6-12 months, then quarterly, followed by semi annual and recently annual or semi annual depending on issues needing to be addressed.

The scans were done initially for diagnosis.

The Doctor plays checkers with my meds.

After Diagnosis the Neurologist met with my three children. Age 22 to 28. To discuss the seriousness of my disease.

a multitude of tests, assessments, and evaluations at Mayo Clinic

DATscan, EMG, Spinal Tap

Nuclear test where they inject nuclear dye in to the system and you wait three hours for the scan

Review of the Apomorphine pump

Sees a neurological psychiatrist every 3 months

Electromyogram test

On going care hasn't started yet

Pulmonologist consultation GI consultation

comparison MRI and a testing center for the sementia where he had several hrs. of testing that diagnosed frontal temporal dementia and not alzhemiers

Every three months I receive Botox shots in both legs and back from my neurologist.

swallowing issues, had 2-swallow studies performed and sleep study.

New symptoms review Tests or referrals as necessary

muscle biopsy, EMG

Neurological/chiropractic care

medication management

Swallow study, tilt table test

Sweat test at Mayo in Rochester, Minnesota

Spinal tap, EEG, PetScan, Neuropsychological testing

OH tilt table test

He had had one MRI in the last 5 years

Dr has moved away,so need a new one

Blood tests

DAT scan

Dat scan

Literally became a check in where the neurologist said “yes, your symptoms are worsening”. No advice - but it helped the patient feel like he had an audience at least. The visit itself helped combat some depression.

currently trialling Parkinson drug but no benefits yet.

Skype consultations as neurologist is in Melbourne (we’re on other side of the country)

Had some physical therapy for walking and learning how to walk with my balance problem and exercises for stiffness.

We've found these visits pretty useless as there's really nothing to be done. (This has been intimated as much by the neurologist herself/himself)

Video interview to document progression

Nerve conduction tests, rehabilitation hospital, Physio therapy, eye tracking exercises

Nerve conduction tests, rehabilitation hospital, Physio therapy, eye tracking exercises. Sleep specialist alarmed at my gait & symptoms months after discharge from hospital and rehab. He referred me on to another neurologist who was “interested in genetics”.

DAT scan, spinal fluid exams, hot box exam,

permanent Bladder catheter surgery

injections to help relieve dystonia in toe and foot

palliative care counseling

has been given MRI once (for diagnostic purposes)

Neck strain and pain just before syncope and stuff man syndrome seizure.

Evokes potential and others I don’t know about

neuropsychological assessment; neuroopthalmologist exam

Just had a "Memory Study" done in February. Dr. stated my evaluation was very good. Dr. Manik had ordered it to use as a base line.

He has difficulty at times swallowing and once a year they have done a swallow test. So far he is ok

Referral to more specialized neuro, referral to OT, PT, SLP, tried different meds, told me when to use mobility adaptive devices. Cheerleader.

tilt table test

Blood work

Botox injections in legs & thighs

Lots of blood tests, which ruled out other diseases, this the MSA final diagnoses

Periodic blood tests

engaging neuroplasticity to slow down progression of symptoms.

Tilt table test

Tilt Test, Blood Work, Urinalysis

Neuro opthamoligist assessment

I was in hospital so not sure what other tests he ran than tilt table test.

Had Dat scan following initial diagnosis.

Autonomic test Thermoregulatory sweat test MRA Speech consultation Physical Therapy consultation Urology consultation Nephrology consultation 24 hour blood pressure monitor

spinal fluid test

Dr threw his hands up and said he couldn't help, he had no idea on how to help.

Botox

If the individual participated in clinical research, which agency/group oversaw the study?

NIH

Mayo Clinic

University of Michigan

University of Florida

Hershey Medical

Mayo rochester

U of m,michigan

Vanderbilt University

Astra-Zeneca study

Alfred Hospital Melbourne

Vanderbilt

Mayo Clinic Jacksonville

neurologist, respiratory professor, virtually all scans tests and examinations covered over the last twelve months

Beth Israel Deaconess Hospital

Emory university of medicine.Atlanta, ga

Beth Israel of Boston

Michael got part in a few trials at the Royal Hospital Belfast with Dr Gibson unfortunately Dr Gibson passed away during trials

mayo Clinic trial of Rifampicin

Stanford clinical study.

NYU

United Buofeed???? in King of Prussia, PA

Mayo

Univ of Florida

University of Sydney, Brain and Mind Research Institute

By the time we received mom's change in diagnosis, we were already on borrowed time & she was in a wheelchair with very limited mobility...even getting to the doctor was taxing & required help from my husband or son

Cleveland Clinic Foundation

Rush chicago

Johns Hopkins believed I had CA-14.

Greenslopes Hospital

university of michigan

Hospital in Ann arbor

pist mitten autopsy by Mayo

UBC did an informal research with my Dad and brother; as my father was diagnosed with Parkinsons a few years ago.

University of Saskatchewan neurology dept. clinical trial of Neupro patch

Public health records

University of Colorado

UCLA Dr. Brent Fogel 2014 do not know. Left Blood sample

Mayo Clinic Stem Cells

Astra Zeneca Clinical Trial

NYU Langone Medical Center in New York, NY New York-Presbyterian University Hospital of Columbia and Cornell Michael J Fox ASTRA ZENECA

Beth Israel hospital in Boston

Pet Scan Biomarker Medical research Study Done at U of MI

None,he was far too progressed and did not qualify.His symptoms were just so fast

UMD Eutaw St MD

NYU Langone Medical Center, Dysautonomia Center

Autonomic Dysfunction Center at Vanderbilt

Mayo clinic Rochester MN

unknown

Future study: NY Langone dysautonomia clinic

University of Rochester

Betyiti

Mayo Clinic Rochester MN

Vanderbilt Autonomic Dysfunction Center...Dr. David Robertson (Oct..2003) and Mayor Clinic...Dr Low (2014)

columbia university physical ,history, bloodwork

NHI

University of Colorado, Colorado Neurological Institute

He tried to get into a study at Mayo but was too progressed to participate.

University of Colorado Neurology Department

None

Astrozeneca-AZD3241-Stanford

Beth Israel Deaconess Hospital, Boston

Mayo Clinic

mayo clinic brain bank

AstraZeneca Blind Study

UBC Movement Clinic

Vanderbilt Universith

University of Rochester, I believe

N/a

We did attend the MSA Coalition's conference in Nashville in October of 2017

Mayo Clinic, MN

Dysautonomia clinic NYU Langone

Vanderbilt

Dr. Jancovic MD in Houston Texas Movement Disorder Center.

Ponies study for Parkinson’s Disease notnMSA

Mayo Clinic, Minn.

movement disorders clinic at the Ottawa civic hospital.

NYU Langone dysautonomia center

UTSW, Dallas

UT Southwestern NIH

Hospital Clínic de Barcelona

Mayo Rochester MN

UT Southwestern

Mayo Clinic, Rochester

If the individual participated in clinical research, what was the purpose of the study?

Diagnosis

Study of brain

Slow or cease symptoms

Using magnetic tools to assist with diagnosis

don't remember

Rifampicin Trial

Rifampin

n/a

compare to Parkinsons

None

How if at all what effect Rifampicin has on MSA... They stopped the trial early due to actually make some patients worse.I was on a placebo.

It was for Parkinson's. Symptoms, everyday , gave blood also.

The affects of rifampin an

earlier detection of MSA

Epilepsy

Dr. Gilman was researching for MSA, my husband donated his brain upon death

Efficacy of Rifampicin, results negativive,study stopped,still taking because of no ill effects. no changes. also taking ragaziline and citlipram.

MSA study

Rimafrin

To teach physicians howt o diagnose

don't know- possibly what medication or treatment may help

family MSA genetic study

Effect of terazosin on motor skills in patients with MSA. Double blind study

blood study

genes?

To find out what she had.

data gathering

diagnosis

Study of the brain and function with msa

early detection

Spent 6 months in hospital before they found it was shydrager

Medical research

Research for diagnostics

To determine if mesencymal stem cells were safe to use in humans.

administering med through patch system

To determine if the condition appeared to be inherited

1. Drug Therapy 2. Long Term Study - Alzheimers Study expanded to include other neurological diseases.

Study on neuropathic orthostatic hypotension

To take a research drug

Stem cell research

AZD3241 myeloperoxidase inhibitor to reduce inflammation and slow progression of MSA

ASTRA ZENECA was for a MSA medication

Follow patients, offer support

To Detect Biomarkers and be able to stage MSA-p

MSA cohort study

Following people with movement disorders.

Retina studies for early detection of MSA

Effect of Drinking Water on the Pressor Response to Pseudoephedrine in Patients with Autonomic Failure

General research to find out why this is happening

unknown, guess for his patients?

OH study

Beth Israel deaconess

Own Stem Cell placement therapy

Vanderbilt Orth static Hypotension. Mayo how vessels control BP and attempt to identify possible environmental and genetic causes( Dr. Cliff Shults San Diego Study)

backround info

Fact gathering

To determine if the condition was hereditary, to determine the effectiveness of medicine

To determine if MSA was inherited

Asyne modification

It was a study to aid in the diagnosis of MSA through skin biopsy.

Observation

dedicated brain for research and disease confirmation

possible treatment medication for MSA

PET scan to look at Tao protein in brain

Blood pressure, sweat test

Raise no

N/a

N/A

General dna sample and two surveys

DNA, search for bio makers, and two longitudinal studies

Find out if strattera increased low blood pressure.

Regulate BP

The study was done during the years 2003-2007 to research the progress of the MSA and research to find cause of illness.

Collecting bio marker data

Gathering baseline data and adding info to general data base

differentiating between Parkinson's and msa using mri.

1. The first clinical trial was for low blood pressure medication strattera or amoxetine 2. I’m now in a clinical trial for the futility of Sirolimus

just surveys for the effects of the disease

MSA assessment

Research

Unknown

Stem cell treatment

If the individual participated in clinical research, what were the outcomes of the study?

Brain autopsy , Florida. Diagnosis MSA C

n/a

Confirm diagnosis

unknown

None yet

Don't know he stop as he got worse.

Not done yet

Still underway

don't know

Ongoing

Noneffective

Didn't help

No study

None

see previous answer

Not sure!

They had to stop the study

ongoing

Above

Fail

still ongoing

I don't believe the study was completed because not enough patients. I did notice an improvement in walking and motor skills and continue taking terazosin to this day.

dont know

They found in the end that it was Shy Drager now MSA

Didn't complete the study

not completed

Confirmed MSA

Undetermined

Stem cell injections above 50 million were not safe to use in humans.

favourable method of administering meds

His condition did not appear to be inherited

1. The drug proved not to effective. 2. Either the Long Term Study was canceled or I was never asked to return.

They worked with different agents to reduce NOH. I can't remember what the conclusion was, but he was at Vanderbilt around February 2014.

He was too far advanced for the drug

Good at first

Currently still in progress

Didn't get accepted into drug trial

???????

Still ongoing

On going research, we don't know all results

Not positive we

No change what so ever

Nother sure

Not heredity, had reaction to medication

MSA did not appear to be inherited in his case

Posted clinicaltrials.gov AZD3241 MSA

Don't know.

confirmed MSA-C

negative

Have not received results

Don’t know

N/a

N/A

Still in progress

I am still taking strattera (atomoxatine) . It maintains my blood pressure. It.drops when I stand but not by so much.

Positive—medication worked

We were never given the results. The only thing we learned from the study was that my husband was the last one surviving.

research not concluded yet.findings not released yet.

I am still using amoxetine for blood pressure

No idea

In progress for 3 yrs

Unknown

Established the safety of spinal injection of patient’s own stem cells

If the individual participated in clinical research, please describe the individual's satisfaction with the study experience:

Sol

None

At first it was interested, to find out what was going on, then he got tire of all the test.

See above

Very good.

Good

excellent

Wished it had helped

satisfied with competency

good

None

I knew i was on placebo so i was glad trial ended early.

Not.

I didn't want to,participate because I knew I had the placibo

very good experience, researchers were amazing people

Overall lacked feedback.

Excellent

Good food.

satiesfied. still ongoing

Very satisfied.

just donated blood

n/a

It was good to find out what the illness is

Very good

excellant

great

Yes it felt like I could help others

My experience was unsuccessful.

very satisfying results

It was only a blood test.

Decided I was going to be more selective in research I participated. 1. With the advancement of tools available, I would have been interested in participating in studies that researched the underlying cause. Not as interested in finding bio-markers for a drug manufacturer sponsoring the research. 2. After Dr. Sid Gilman left University of Michigan, leadership (Head of Neurological Department) in my opinion chose to de-emphsize MSA. Top leadership focused on diseases they each had own research labs being funded.

He seemed hopeful that the new medication would reduce NOH. Eventually he was able to get off that medication as well as the nitro paste as he became less active.

They ran different tests to confirm the suspicion of MSA

Wanted to continue .. Was denied

To be determined soon. Final PET Scan scheduled 8/23/16 @ Yale New Haven CT

Katie was happy with the trials except for ASTRA ZENACA.

Very thorough, but very LONG tiring sessions. Abundant paperwork, Back to back on all system assessments without breaks.

OK-positive experience

No clinical trial but traveled to Freeport, Bahamas for stem cells....sadly, no improvement from this!

Will continue to be a research participant

unknown

My husband was satisfied with the experience and glad to add to body of research.

Weak

He was satified

She wanted to do anything that might help herself and others.

Happy to participate

fine

Good

Fine.

Satisfied

non-effective and very intense visits for 6 months

Positive

Satisfied

He was pleased to be part of research.

N/a

N/A

Thrilled to be a participant!

I was very satisfied, I am hoping to do another study.

My husband received free medical care during the study, but was not given any results of the study.

Fine

No concerns

overall positive experience. high level of professionalism. utmost care and concern from staff.

I enjoy working with the team at NYU Langone. They ensure my safety and they answer my questions. They have instilled a trust.

of no help to us. surveys provide information to clinic

Pending

Very satisfied

She felt that it slowed the progression of her disease

With regard to possible MSA-contributing factors, which of the following did the individual experience prior to receiving a diagnosis of MSA?

Prior single traumatic brain injury	35	4.5%
Prior multiple traumatic brain injuries	14	1.8%
Prior single head trauma resulting in concussion	68	8.7%
Prior multiple head traumas resulting in concussion	72	9.2%
Prior history of chronic headaches	109	14%
Prior neck injury	77	9.9%
Prior multiple neck injuries	34	4.4%
Prior exposure to chemicals/toxins	215	27.5%
Prior exposure to high levels of stress	133	17%
Prior diagnosis of Post Traumatic Stress Disorder	41	5.2%
Prior diagnosis of Seizure Disorder	18	2.3%
Family history of Alzheimer's Disease	80	10.2%
Family history of Parkinson's Disease	77	9.9%
Family history of Multiple Sclerosis	19	2.4%
None of the above	240	30.7%
Other	237	30.3%

Please tell more about the contributing factors stated above:

Mother and grandmother had dementia

Bad headaches when young

Possible viral meningitis, a few years later a possible mini stroke or seizure.

Former Career US Army Officer given in 1987 a medical retirement for combat related injuries from the Vietnam war. I served as a Airborne ranger in the 82nd Airborne Division with 68 parachute jumps and later was a armored tank company commander twice. All in total I had at least three head injuries in combat and at least 6 to eight concussive injuries. I was also heavily exposed to chemical agents like agent Orangel, red and blue.

Fire fighter smoke

He strip and wax floors as his job with out using protection, always complain of headaches, work long hours.

As a young man, he worked with solvents in a textile plant.

Grandmother had Alzheimer's

Heavy timber construction worker - a beam knocked him down and fractured his orbital bone, cheek, concussion, broken clavicle. Also exposed to various chemicals during work, above acid baths, corrosive chemicals, etc, carbon paper factories, etc. Gas and diesel fumes.

Multiple car accidents, motorcycle accident, pesticides, asbestos

Car accident resulting in concussion & memory loss. Numerous whip lash (jerking of head) from sudden scare causing severe neck pain. I worked in chemical plant for 9yrs & I use a lot of home cleaning products without gloves or masks. Stress: abusive husband for years, unrulely daughters, single mother, traumatic family issues

Worked for 20 years in air conditioning repair using chemicals such as freon, etc Father and grandfather had Parkinson's.

Pt swam in a chlorinated pool 2 hours a day, 7 days a week for 20+ years ! Pt had and still has a child who is highly socially dis functional ( questionable bi-polar) who created and still does complete havoc 24/7! She is currently 24 years old !

n/a

The condition presented in full after MVA with head trauma wi secondary small hemorrhagic subarachnoid hemorrhage in April. By May full blown picture.

Exposed to mercury in early teens. Exposed to DDT, Deildren, Sheep and Cattle dip and other toxic chemicals in childhood.

Had MVA April 2012. By the end of May 2012 full blown picture developed. Had a head trauma with a sub arachnoid hemorrhage self es absorbed developed.

hi level leadership accounting role.

Worked for fire department for 13 years. That accounts for high levels of stress and exposure to toxins, mainly smoke.

Never officially diagnosed with a concussion, I never went to hospital the several times i had blows to my head

The neck injury was whiplash motor vehicle accident Chemical exposure was in my job used I the cleaning of machinery for food production

aunt with parkinsons

Several falls causing concussions (from horse, gymnastics), rear end car accidents, neck injury with horses,

He was a aircraft mechanic, worked around a lot of fumes.,also , when a small boy his mother and him was found unconscious and brought back.

Fell off a school roof at the age of 11 and hit his head , chipping his teeth and had a concussion.the stress level was from the work he did .

No immunizations as a child, had mumps, german measles, scarlet fever, almost constant strep. Victim of childhood neglect until I left home at 16 Married 11 years to an alcoholic, drug addicted bipolar abusive teacher. Had three kids by age 23 Battered womens shelter with kids, stalked and threatened for years after leaving. One child mentally ill, bipolar and schizophrenic, had to homeschool This child moved in with me pregnant and abused me mentally and physically the year MSA symptoms stared. After raising three girls as a single mom with no support, I am now raising my granddaughter as a single mom with no support, very limited resources and no physical help. She us three and has never had a sitter because I cannot afford one.

Regular exposure to aviation fuels during a 30 year flying career

For 4 yrs he had to do an hour-long flight commute weekly, to work. Early rising, late night return home and extremely stressful job. All this coincided with our daughters' wedding, which added to the stress.

Over the years I had blows to the head. I did not seek medical attention, so I don't know if I had a concussion or not.

My neck has always been a problem for me and I remember when I was young jumpimg out of a tree and hurting my neck but I recoverd ok without medical attention. I have spasms off and on and tightness quite a bit. I am a type A personality and have lived with stress most of my adult life. I have often thoguht that the neck and stress might be contributing factors. Some major stressful events happened about 10-15 yrs. prior to diagnosis.No family history of anything neurological. Eldest sister did have shaky hands and a twitch in her mouth later on in life.

She lived in Belfast Northern Ireland during The "Troubles" and experienced a lot of stress years ago and she was always stressed out about everything her husband died of Motor Neurone Disease at aged 45 when they met they worked in a toy factory together, there were solvents used there it was early 1960's always wondered if there could have been something they were both exposed too.

He is a business owner and whenever a stressful situation with partnership etc occurred , symptoms increased. paternal grandfather with alzheimers at 60-70 years of age

As a high school multi-sport athlete, and a scholarship collegiate basketball player, I broke my nose twice; and separately had my front teeth knocked out. I also suffered 2-3 neck injuries that were in the late '70's-early 80's called "whiplash" but led to 4 herniated cervical disks. I also have two herniated disks in lower lumbar. Ironically, since being diagnosed with MSA nearly 6 years ago, and quickly embracing yoga and a focus on proper posture, I have had a much improved experience with neck/lumbar spine-related pain and stiffness.....the best stretch since my early 20's. My Dad was diagnosed with Parkinson's Disease at age 70 and died at age 82 of PD complications.

I was in 2 car accidents that resulted in whiplash and had a few falls earlier in life that resulted in concussions. My father and his father have/had Alzheimers. Maternal grandmother had tardives dyskinesia. Was also in a motorcycle accident 2 months after dx

He had been depressed thrice majorly in lifetime, his father had similar symptoms died at the age of 65.

My husband fell10ft onto concrete, hitting his head, resulting in a serious concussion, this happened at ah

Primarily an electrician but involved in all phases of construction and remodeling, including gluing, painting. Worked at the railroad on diesel engines. High stress job as manager of all construction shops at Federal government agency. His father had some form of dementia. Stuttering from childhood to present (except when angry or singing), and dyslexic, i.e., seeing the letters in a word from right to left.

What i was having the symptoms for MSA was told by some doctors and family members that they were all symptoms of epilepsy or having for so long that this is what it had done to my body. also would say something to someone and they would say it was a sign of aging Made me think it was all in my head and the only one that could make alot of the symptoms go away was me.have been a very nervous person all my life.by the time MSA was even spoke,had never yet heard of the disease.

6 concussions from age 15 to 32

wonder about COQ10.

He owned a porclein fixture sanitation business in the 90's.

Exposure to pesticides like Agent Orange in Viet Nam.

Multiple injuries in car crash, 20 surgeries, both orthopaedic and related to intestinal injury in the crash. Head injury, ptsd, headaches, all from crash. I worked in a building that was not properly ventilated during renovation on other floors. Strong toxins where used to clean marble walls (old government building, lots of marble)

when I was first diagnosed with Parkinson's my employers seemed determined for me to quit

He worked in farming and landscaping all of his life where a lot of chemicals were used especially insecticides and herbicides.

whiplash requiring treatment due to auto accident 30 years before onset of symptoms

fell off a school roof at the age of 11 hitting his head and had a concussion for the day , maybe longer. No doctor was seen. High stress at the work he did.

my husband was exposed to agent orange when serving in Vietnam. He fell down the basement stairs 4 years prior to symptoms and was hospitalized over night with a slight concession.

Going over the handle bar of a mountain bike hitting my head on the pavement. My helmet was cracked.

He worked over seas in the oil field first as a rig diver then as a production tester as well as four years in diesel submarines

Stress at work and home

Individual had a house with mold from 1999-2009. Some relatives (not parents or sibling) had Parkinson's Disease.

MY father had parKinsons' disease

Neck injury playing footbal. Was put in traction in hospital. He worked at General Tire making tires for a couple of years. Was exposed to toxins in cleaning liquids during his work at Morgan Auto Parts. Has always tested high for metals in his body.

Worked a very stressful, demanding job and during the many years on the job, did have some exposure to chemicals.

In Vietnam on Navy ship exposed to toxins

Car accidents, skiing accidents. Work stress , home stress.

Patient's mother and maternal grandmother had Alzheimer's Disease.

Extensive exposure to Agent Orange in jungles of Vietnam 1968-1969 at age 22.

Stress at work Environmental dumping

Patient had petit mal seizures as a child. Maternal grandmother had Parkinson's .

3 of the 4 boys of the family had MSA symptoms the last boy who has no symptoms was not exposed to Agent Orange.

given original infection by doctor - admitted infection and named. played ignorance when infection spread to my left foot/ankle, which was swollen and I was on crutches. Doctor said I didn't have to see him again, but four days later, woke up and I couldn't put any weight on my other foot. Saw another doctor who looked at my feet and wanted me to go to the EM. Went next day and white blood cell count was high.

none

Played high school football 2 conclusions lost consciousness once worked in the auto service industry from the age of 17

He had fractured his skull in 1984 and did suffer brain damage it had caused him to suffer seizures, and short term memory loss

My husband worked for a vengeful and nasty father-in-law. My husband subsequently bought the business which was heavily in debt. My husband was a highly responsible man who worked very long hours, often around the clock, to keep the business going and pay the bills as well as his employees. The business was unionized with two unions to contend with. Often their demands were beyond what we could afford but we had to comply, or stop production at a time when business was at it's peak. Year after year I saw my husband more tired and with a defeated appearance and attitude. Years before dx he was always tired. He had lost the spark and joviality that he had when we married. The children said that they remember their dad as always being tired. My husband was not one to share emotions, talk about his feelings, so the stress was held in and became part of his daily life. He had little time to do anything pleasurable.

The first symptoms appeared after surgery

transverse Myelitis was diagnosed about 10months before diagnosis of Parkinsonism.....

Poor diet Multiple falls possibly due to alcohol lack of regular exercise no stress management

I lived with a husband with bipolar for 20 years who refused to take his medication and also worked as a teacher who was often given troubled children to deal with.

Father diagnosed with Parkinson's disease Approximately one year prior to my being diagnosed with MSA. I have been receiving medications for bipolar disorder since the age of 18. Very stable until rapid menopause 9 years ago. Had severe manic episode, was hpspitalized, then crashed to severe depression, received 32 bilateral ECT treatments, lost all memories of about 4years prior to ECT. Short term memory slowly improved to almost normal, then symptoms of MSA took over

not sure how much the stress was external vs. idiopathic

Treated for undiagnosed stiffness of neck, unable to turn head, 5+ years before diagnosis

Worked as a farmer, exposed to various chemicals, ex: spreading fertiliser without any mask, agitating slurry without a mask.

He worked with all kinds of chemical s and toxins his whole life.

I have looked after myself since I was 13, now 66.Am single and now miss not being married.('m too young to die.

He has had cluster headaches since he was 27

little detailed memory ,polio outbreak in England in the 50's I contracted with sugar cube vaccine drops. Wheelchair left side of the body affected as in MSA.

I did a lot of welding was around dolt of toxins iwas also hit by a train in 1996

For 18 months prior to diagnose I got dizzy on a regular basis when I got up in the morning. Past 12 months I have had issues with my writing, occasionally would drag my leg and my right hand started to tremble.

Worked as mechanical engineer -exposure to chemicals. Two adult male cousins diagnosed with Parkinson's Disease or 'Parkinson's Plus (not defined as MSA). All three born and grew up in Maine.

mot today

old job resigned after 20 years, started new job,marriage fell apart after 30 years, sol d family home,bought new home. cat had to be put down I did it he was 18, son told me he was gay, children left Brisbane for sydney and canada so am alone although close to kids

hi stress job as independent midwife

24 years prior to being diagnosed, my father suffered a major head trauma through an accident at work, causing spinal and neck injuries, he spend a good bit of time in hospital to recover. And a long time at home after recovering before retiring to work again.

My Grandmother (mom's mom) had been diagnosed with late stage Parkinson's while in a nursing home yet in her late 80s, she lived to 94 years old...what we know is Mom went thru the same thing as Granny, but at an accelerated rate.

In 1970's, we used a chemical to "fog" pastures. Attached a tank to the tractor's front. Reduced insects, but the tractor driver would drive through the fog because of the tank's location. I don't recall the chemical. We used it for several summers. No one ever became sick at that time. Lawyer for 20+ years. Litigation with law firm, then in-house, which I enjoyed, but was stressful.

Played hockey all his young life and up to 35. Played golf until just prior to diagnosis..had a steel beam fall on back when in 30's but went back to Physical work 3 months later...was a very active man. Building houses and was an electrician.

Worked as an auto mechanic for many years

He was a chemist for at least 7 years

Numerous surgeries.

Mother had Alzheimer's

She fell backwards from a short step in church, severely spraining an ankle and receiving a concussion, 2 years prior to diagnosis of a Large demylenating brain lesion, which was thought to be cancer. No changes to MRI over 5 years, so diagnosis changed to brain injury.

Ag chemical salesman

Lived by barrels of toxins and breathing in insect spray fog back in mid 1970's

For years, my spouse was in a demanding broadcasting job. He worked long, stressful hours, 5-6 days a week.

Car accident in 1973 which knocked me out and caused a concussion. I used to have migraine headaches but they stopped without any clear reason. I am a lawyer so had a considerable amount of stress in the practice of my profession. I retired for medical reasons last year.

Worked a high stress job requiring stress and >60 hrs per wk

Other

In the past/last year, how would you describe the rate of progression of the individual's MSA illness?

(1) very few signs of any progression in the past/last year	21	2.6%
(2) some subtle signs of progression in the past/last year	67	8.4%
(3) definite signs of progression in the past/last year	389	49.1%
(4) rapid progression in the past/last year	306	38.6%

Please add any comments related the individual's rate of progression in the past/last year:

She passed

Speech and balance ( walking have seem to gotten worse

Had a difficult time during pregnancy. Delivered 2/19/13 at age 43. All symptoms were greatly exaggerated during pregnancy and Parkinson's meds had to be increased to retain mobility and stop cramping. Started neupro after delivery and meds were decreased back to close to previous levels. Symptoms have worsened since then. Increase in sinemet and neupro last month.

blood pressure is becoming increasingly unstable as is heart rate. Losing more control over bladder and walking even with cane is much harder. Talking is much harder and being understood is much more difficult. Choking is more of a problem and getting worse. I have lost more fine motor skills and cannot use one hand almost entirely.

Last year used a walker now in a wheelchair most of the time Speech getting worse

He died in 2012.

Dystonia is worsening as is my blurred vision and balance issues

Worse dysarthria Increased loss of balance Poor walking Dizziness

Pain in legs and feet worsened, with daily exercise walking ability fairly stable except when tired. Neurologist prescribed Madopar recently “to try to reduce restless leg pain symptoms”. 125mgx2 daily 4 & 8 pm. Has helped. Not having awful leg pain in night and mornings as much.

Musilli

I seem to have a new subtle symptom each month or so.

Rapid since October 2013..... Especially cognitively

Balance issues have worsened Speach is worse Over production of saliva has worsened

No walking, we need to rectally remove her bowel, unstable emotionally extreme fatigue etc!

More frequent episodes

Required insertion of supra pubic catheter Chronic constipation and loss of muscle tone affecting defication Muscle wastage despite physio routine Worsening parkinsons symptoms with debilitating fatigue Require two wheel frame with sliders in home and wheelchair for outings due to parkinsons symptoms and balance impairment as well as BP fluctuations..postural drop, bradycardia.. Autonaumic dysfunction Swallowing problems..tolerating small amounts of moist minced diet. Cranial nerve dysfunction Gastroparesis, oesophageal spasm, nausea and vomiting Cognitive dysfunction, confusion and memory impairment Require assistance with personal care and home help, cooking

More frequent spells of my neurological manifestation. At least twice a week minimum.

is full care. unable to walk, speech difficult to understand and has problems sometimes choosing the appropriate word, supra pubic tube inserted 8 months ago, chronic issues with bowels, very slow, struggling a little with swallowing, tremors,

More difficulty with walking and balance. I wear a brace on right leg and use walking sticks. Now use a scooter if I am shopping. More falls. More cognitive changes, trouble focusing one more than one thing, forgetful and some confusion. Biggest change is greater fatigue, spend most of the hours of the day laying in bed.

I saw Dr.Novak in Worcester, Ma april/2013 At that time he put me on carbidopa& levodopa for which it didnt help so i stopped taking and didnt know i was supposed to ween off the drugs. I fell while getting out of shower,couldnt get up and ended up in the hospital for a few days.. since the fall in a weakened state, I've never got back to cond prior to going on those drugs & getting sick,,,

Hospitalization seemed to increase symptoms

There was 2 yrs between the sleep disturbances and gait disturbance, with eye, Speech, fine motor skills and bladder problems following quickly

Actually , it was his last two month he progressed very fast. Went to his dr. At the end of Aug.,and he passed Sept. 17th , 2013. His meds just did not work, he could not eat, swallow,could not use walker and could not even strong enough to stand with help. His breathing was shallow, on oxygen. Since seeing the doctor in August. He went less then a month and he was gone.,he went into,a coma last 24 hours. He was on morphine the last 4 days., all meds were pulled when the doctor said they were not working anymore.

Stridor breathing, many falls and more of the progression in the symptoms they already had.

After an extremely stressful eight weeks, I woke up with new symptoms of choking, slurring, hoarseness and shuffling gait and respiratory insufficiency. This happened overnight. My older symptoms were much worse.

From being diagnosed last year in Jan 2013, she was walking by herself and talking. She now can't talk and goes everywhere in the wheelchair and has huge difficulty trying to get out of her chair.

Speach went, couldn't walk or stand, swallowing got worse, nil by mouth, on oxygen to help him breath

His mobility is much more compromised, hence he has become far more dependent on my help. He can no longer do all the myriad chores he used to do to help me around the house. Cannot lift his grandchildren or play with them anymore. As making himself understood is difficult, he doesn't like to talk on the telephone anymore, and he participates far less in general conversation.

I was only diagnosed 13 months ago with Parkinsons /mild case. Symptoms did not improve with sinet and went for 2nd opinion. Received second diagnosis in Nov/2013 of MSA. In this past year there has been a definite change in my balance and walking. /Before slightly off balance....now need to hold on to someone, use a cane.I do better now with the bladder, insomnia.

She only lived for about a year after diaignosis

It was a slow progression of symptoms until this last year. Diagnosed with MSA informaly in february and told in August. Since then the decline appears to be steady.

Hard to walk Hard to get out of a chair Hard to get in and out of bed Swallowing sometimes a problem Very tiny writing Voice comes and goes Falling

I had a fall in June 2013 that led to a "mild" concussion but it worsened all my symptoms. Then in late November 2013 I was hit with back-to-back incidents of Shingles. This produced new symptoms (Raynaud's, and serious neuropathy in arms, hands and feet), as well as worsening existing symptoms. I am using a walking stick for the first time since diagnosis, to help with balance especially out in public, and/or when fatigued.

New symptoms keep appearing.

None of the signs found before 3-4 years( except shouting while asleep), fit enough to walk daily 4-5kms and cycling, everything started happening rapidly, increase in fall, faint(after 2-3 years diagnosed postural hypotension), urinary bladder disorder, bowel disorders, slurry voice etc, rigidity, lost the strength to get up without using hands if set below knee level, HE HAD IMPROVED IN LAST TWO MONTHS - constipation ( ayurvedic medicines helped) , urinary incontinence( urimax d helped), electric/tingling pain in legs( delok 30 helped), slurry speech ( with the help of physical therepy also had moderate to severe cervical disease too), He died within 3 years, though yet to get confirmed MSA_P ,autonomic test left undone, he had fever and cough in his last 2 days.

Too rapid

He recently suffered a serious gastrointestinal issue that hospitalized him for a 10 days. While there he contracted a UTI. The medications, especially Flagyl, made him out of his mind among other things. He did not fully come back from that event, and is now required to be on Flagyl again. The medicine is working but the side effects are devastating. He can barely stand let alone walk, and last night he was hallucinating. If he can come back this time I know it will be weeks, and he doesn't have that many weeks to spare.

in the past 2 years went from a minor ear infection and being called drunky as a joke by neighbors to seeing more drs. and types of drs. than i have seen my whole life and having MSA which I had never heard of. Drs.should know that there is such a disease even if they havent got cure yet. they havent got the cure for caner yet they know they have cacer. Not knowing is harder on me than knowing what is wrong.Plus you can deal with having MSA.People know what Cancer means.When people say MSA all you hear is"what's that"?

While he has been having increasing difficulty in the last couple of years now he cannot walk or talk. In the last few months he has lost control of his bowels, his hands have become very rigid and he cannot raise his arm to indicate yes. He has trouble swallowing and occasionally breathing.

Stopped driving.

He was hospitalized for serious bronchitis, pneumonia and possible flu during which time he was very close to dying. He recovered remarkably well but not to the pre-pneumonia state.

Weaker, using walker and scooter completely, loss of bladder control, eyes dry/tear, breathing difficulties, a meow sound upon exhale. Forgetfulness, emotional, tired easily. Balance off. I walk like I am drunk and have tremors when I am doing something g, no so much when I am still.

Received diagnosis in 3/13 and since then has lost more mobility, worsening swallowing and speech problems, incidence of infections increased, incontinence worsened, body's ability to regulate temperature has also worsened, head tilt and Pisa syndrome have become more pronounced

Motor skill drop too much, can't walk any more.

balance problems has increased walking difficulty has increased tremors vision problems good side is almost as bad as bad side trouble picking up and holding objects speech problems

Once he began to having issues swallowing, all of his voluntary movement was greatly diminished. Immobility led to more depression and a desire to give up.

I am scared.

Patient is no longer living , but did have plateau without much different the first couple of years. In the 3rd/4th yr definite signs of progression. Last year rapid progression.

Due to Maureen's denial & as previously stated lack of therapeutic interventions, her progression was quite rapid to me (due to my knowledge & acceptance of this disease) & I noticed more than her husband. Unfortunately, he thought I was over reacting & disregarded suggestions to aid her.

My husband survived 7 years after diagnosis, 2 years prior to his death he was bed bound and had to be transferred. He could not stand. At this time he also had a superpubic catheter put in. 5 days before his death he had a feeding tube put in.

Because of my lost of balance, in less than a year I progressed from using a cane to a walker very rapidly. When I go see my doctor for appointments I use the wheelchair to facilitate time.

He was less and less able to talk, move, care for his self, aspirating on food and liquid and finally could not move and finally died of respiratory failure.

Progression becoming more rapid since the beginning of 2014.

He was diagnosed in August of 2013 and has continually lost weight..now at under 119 lbs. He is in a wheelchair and cannot walked by himself for quite a while. He is unable to feed, dress or bathe himself. He has lost volume in his voice and is hard to understand. His mind and memory are still amazing.

In the last year, the ability to walk more than few feet without losing balance or falling became difficult. Mostly used a wheelchair. Had to be on oxygen full time. Breathing, coordination, strength became extremely labored.

In 2011, he began fainting and having seizure-like symptoms while unconscious. These episodes increased over the next two years. He his is head sometimes, but never had an injury requiring stitches or bandaids. In January 2013 he collapsed twice within 8-days breaking the toilet both times. He was formally diagnosed on July 25, 2013 and passed away May 2, 2013. He went from being able to be left alone at home or at Starbucks where he could order coffee and breakfast and read the newspaper in early July to being unable to read the newspaper or other printed materials by November 2013. He could not fold clothing, dress himself or feed himself by December 2013. By the end of January 2014, he had bouts when he could not understand language or move by himself.

Most recently he had steep decline after death of his brother.

The last year of patients life was in rapid decline. Lost over 100 pounds, could not communicate even with the help of communication aids. Wanted it to be over.

March 30, 2013 - first serious symptom ..... trouble walking. By September 3, 2013, he was admitted to a nursing home due to being unable to walk or take care of himself. His home was not handicapped accessible. Unmarried with no one to help care for him.

He was showing very little signs and within 7 months has gone from walking to wheelchair, speech low and slurred, all fine motors skills gone, short term memory greatly affected, vision affected, stridor breathing, choking on own spit, severe headaches and pain in his arms and legs, frequent mood swings,

increasing uncoordination. High risk for fall

7/12 began to experience freezing of gate now 6/14 wheel chair/ scooter bound

Choking on food, very severe sleep apnea, he had severe blood pressure drops

My husband has been dead since 1994.

My mum now: can't walk anymore, can't write anymore, can't cook anymore, struggling with swallowing, less and less able to talk, sometimes can't find the correct word, sleep apnea, bladder problems going worse.... :'(

pretty quick progression, from stomach nausea, to balance problems, to falling, to hypotension, fainting, completer lack of energy fatigue,

Diagnosed with SBIO small bowel intestine overgrowth as an extension of the gastroparesis . Not able to walk much at all anymore.

tremors, temporary pausing, diminished mental capacity, anxiety, memory loss, fatigues easily, loss of strength, flexibility, loss of motor skills. got a suprapubic catheter but still experiences frequent UTIs. rarely walks unaided, uses sticks and wheelchair, spends more time in bed

Progressed from walking with poor gait unaided to walking with stick, speech has become slurred, handwriting nearly illegible, more frequent faints/falls.

Nausea has worsened, and regularly vomits after eating. Went from walking with walker this time last year to wheelchair all the time now. Can't even stand with aids now due to imbalance.

Old neurologist retired. New doctor treats only Parkinson's patients. Discontinued all medication. Said is was pychogenic. Referred me to PT, psychiatrist and biofeedback therapy.

Wheelchair bound , double vision if his eyes were open, said it was like being drunk and room spinning. So my dad kept his eyes closed a lot. He would have attacks of having a hard time breathing and shake for hours, so he would always have to grab my arm and hold it the whole time until it would go away.

My rate of progression has forced my Occupatotional Therapist to question my driving and ownership of a mobility scooter, causing much angst in getting around.. Except for a Category 4 Gov't Package which allows for a part time carer.

She would stay at a certain stage then suddenly drop a level so to speak. She had trouble eating then suddenly food had to be almost liquid, speech went from a whisper to not able to talk at all, she could use her arms somewhat then it seemed over night, she could no longer lift her arms/hands to scratch or what ever to her face or any where.

Christmas of last year I walked unaided, now I can hardly walk with the aid of a walker

walkin an talkin rate increased rapidly

I am not able to work. Frequency of dizzy spells has increase to several times during the day. I need to focus on my walking or I'll trip. I have to take several breaks during the day including at least one nap. I'm on edge driving. Easily distracted. Difficulty focusing.

balance

since diagnosis in oct 2014, mobility has declined, walking is more difficult and i need aids such as a stick, walker wheelchair and mobility scooter

The last year the rate of progression has been rapid, major weight loss, unsteady, use of walking stick and mobility scooter and the left side the body is very slow to get motivated, sleepiness is also become a big problem. It's only been 4 months since conformation of MSA

Moving to electric wheelchair from manual wheelchair, because of increased muscle weakness.

Has become much slower..more fatigued. Speech very slurred..uses a walker and a scooter..cannot walk very far so uses scooter more often..sleeps much more off and on..has more difficulty turning in bed and getting up and down from chairs. Feet swell so has stockings on most days.

Went from working and driving in 5/2013 to dependent on a walker 5/2014. To electric wheelchair and walker only with someone standing by in 4/2015. Speech progressed from slurred 2013 to hard to understand 2014 to unintelligible 2015

walking, unstable, appetite, sleeps more, more insecure. asks if he is getting worse. cognitive ability less. talks less.

Much weaker and slower.

Hearing loss.

She had plateaued until 5 months prior to death, when shortness of breath began. Took 4+ months to diagnose the paralyzed vocal chords. She died 4 weeks after, refusing to have a tracheostomy.

At age 90 I experience more aggressive dizziness and headaches.

I lost my voice over a year ago along with paralysis of vocal cords. I have a feeding tube due to slow digestion with two ports of a feeding tube. As noted above with lost of voice, I have a communication device.

Progression was worse in the first year after diagnosis. Then it seemed to plateau. Now, the progression is - as you put it - more subtle but continuing.

My balance is a real issue. I barely sleep and don't take sleeping pills because they give me nightmares. My cognitive impairment hasworsenened considerably.

steady waves of symptoms that come on strong, then weaken as the symptoms are addressed - example: speech treated with speech therapy

Had a fall and got detached retina so hard to tell over last couple months

His head bobs and at times he cannot communicate at all.

Slow progression.

I noticed a big change about 5 months ago . In told my neuro. That and he said he could not notice any change. Switched doctors!

He was able to sit for log periods in his wheel chair, capable to walk a few steps with the physiotherapist's help. Now he is confined to bed, legs bended ( unable to straighten them) Choking and breathing difficulties are also an issue. Unable to move arms and hands

passed away in January of this year.... last year speech was getting worse everyday, unable to walk even with a specialized walker, hard time eating

2014 dec. Walked with a walker. Dec 2015 bedridden. 2014 dec. Great communication. April 2015 very bad commun. 2014 dec self catherized. Bm in tolet. Aug 2014 Emema to have bm. August 2014 foley cather.

Not sure how fast it is progressing any changes have been small but my balance seems to be getting worse

Other

Living Conditions:

If the individual does/did not receive adequate support to live comfortably, please indicate what is/was lacking:

individual has/had no caregiver	29	18.6%
caregiver is/was unable to meet the individual's needs	34	21.8%
individual lacks/lacked financial resources needed for adequate care	106	67.9%
individual lacks/lacked financial resources needed for adequate care	106	67.9%
individual lacks/lacked access to knowledgeable medical care providers	57	36.5%
individual lives/lived at a great distance from medical care/support	24	15.4%
individual refuses/refused assistance	5	3.2%
Other	44	28.2%

Transition Issues :


one year	5
two years	13
three years	33
four years	17
five years	14
six years	2
seven years	5
eight years	5
nine years	7
ten years	7
Other	25

one year	5	3.8%
two years	13	9.8%
three years	33	24.8%
four years	17	12.8%
five years	14	10.5%
six years	2	1.5%
seven years	5	3.8%
eight years	5	3.8%
nine years	7	5.3%
ten years	7	5.3%
Other	25	18.8%

Respiratory failure (stopped breathing)	38	30.9%
Respiratory infection (e.g.: pneumonia)	33	26.8%
Respiratory blockage (choking, obstruction)	7	5.7%
Heart attack	1	0.8%
Stroke	2	1.6%
Other complications from blood clot(s)	2	1.6%
Digestive system failure (unable to digest food)	2	1.6%
Digestive system blockage	14	11.4%
Head injury due to fall	0	0%
Other injury due to fall	0	0%
Other	24	19.5%

If 'other', please state:

Liebe

respiratory failure

Death certificate states Shy Drager

Wisconsin

COPD heart failure aspirational pneumonia

Colorado

Lancashire

Oregon

Florida

Michigan

Cardiac arrest

Dad had triple bypass operation at age 45.

Not yet

Decline

If the individual has/had made arrangements to donate his/her brain for research, please identify the agency to which the donation was made:

Mayo Clinic

University of Michigan

University of Florida brain institute

Washington university School of medicine st. Louis mo

The Brain Bank at Queens Square London

Mayo Rochester

Florey Institute

UT Southwestern

Wants to set that up very soon

not sure yet

national

BMI through drivers License

BMI Drivers License Indiana

Planning to make arrangements to donate brain to Mayo Clinic Jacksonville , FL

cannot find a place in Canada for brain donation

We are in the process of arranging donation

My dad wishes was to leave his brain to msa but unfortunately he's was left out longer then 4 hour, so we where told they could take his brain which really upset us all as that was my dad wishes

I want to donate my brain for study but I don't know who,to contact.

....but I intend to, and must do the paperwork ASAP!!

We were supposed to see the dr about donating brain but he died about 15 hrs before his appointment!!

On my todo list.

Massachuettes General Hospital, Boston, Ma

Oregon Health and Sciences University

OHSU, Portland, Oregon

Penn center for neurological studies.

Mass General Hospital

I don't have that information.

Alfred Hospital Neurological Section

University of Miami Medical School

uc hosp Cincinnati ohio

I plan on donating I just need to see what paperwork I need to complete.

The family would have made arrangements for donation if asked, we were not asked (treatment at Vanderbilt, Nashville, TN last 2 years of life)

not yet but I will

nz Brain research

Something discussed with the neuro and wishes added that when the time comes he wishes to donate.

Not sure yet. Plan to do it soon

It was a hospital in suburban Cleveland, but her son was queasy about the procedure and stalled it until the point where it was too late to donate. The single thing my wife wanted out of having the disease was ruined by an ill informed, ignorant relative.

CurePSP brain bank

Mayo, Jacksonville, FL

NYU

He lives in a rural area and there is no one in the small town that can do the necessary procedures.

U of M

We would like to. Don't know the process.

Www.brainbank.mclean.org

Mayo clinic, Jacksonville

Im happy to do this but I wouldn't know who, where etc just yet. Don't feel sick enough for it to be a priority. We are currently working on our family trust so I guess I'll need to find out then.

Australian brain bank

Not 100% sure

Dalhousie University, halifax, nova scotia

None specific.

Harvard brain tissue research

Mayo Jacksonville

She wanted her brain donated through MSA Coalition, but her son was in charge at the time of death and was 'squeamish' about having it done. The delay in the decision process made the donation impossible.

Mayo Clinic, MN

I have the paperwork but it would be too expensive to do it.

This has yet to be determined, but she will donate her brain for research.

university of Saskatchewan neurology brain bank - bank was unable to accommodate bequeathal

We want to find out how or where to donate my brain for research. My PCP does not have this information.

Initially COLUMBIA Presbyterian NYC.

Dr Lowe. Mayo Rochester

American brain foundation I think. I can check if needed.

Originally Yes. However 2 factors changed my mind. 1. Created more stress for spouse on what would need to be done, causing more anxiety for me. I assured the spouse it was nothing but filling out paper work ahead of time, giving to proper people and making 1 phone call upon death. 2. Originally was going to donate brain to University of Michigan and have autopsy of spinal cord. Given decreased confidence in University of Michigan, number 1 above and my lack of motivation have not moved me to follow up with other brain donation sights.

plan to do so

He plan to make arrangements to do this as the disease progresses.

NYU Langone Dysautonomia Center

University of Miami

Mayo Clinic Jacksonville FL

I don't remember

Family denied

Hershey Medical

Northwestern University - through Dr. Cindy Zadikoff

It is under discussion for us at the moment

Dr lowe mayo clinic mn

still looking into it

None specified at this time

Queens London

University of Western Australia

However we would definitely be open to this at that time , I will be sure to mention to our Neurologist if we haven't already ....I think we did so.

University College London

Agency located at upmc Pittsburgh

MSA Foundation

Dr Brink, Stellenbosch

Beth Israel / Mount Sinai

Mayo Clinics Rochester MN

University

Early we had it worked out with Mayor, but the process to pick up and deliver changed and I as a full time 24/ caregiver did not have the time to work out a new process!

She wanted to donate her body to Science for research to Oregon Health Science University, but they declined her body stating she was overweight.

Mayo Clinic - FL

Koo

Mayo

University of Pennsylvania

UCLA

I’d like to donate her brain though

Mayo Clinic, Jacksonville, Florida

mayo clinic brain bank, florida

we would like to but don't know how to go about it

How do you do that

still looking where to donate

Other

Your comments:

Please feel free to add comments, observations and experiences which you feel may be helpful to others who research, educate and raise awareness of MSA:

MSA is really in the ALS family not Parkinson’s

There is really not enough information out there about MSA , We had no idea what this disease was until my husband got it ! Went from dr to dr place to place trying to find out what was wrong with him. Doctors that know nothing about this disease ( That needs to change,We live in Louisiana and it’s unbeliveable that our state doesn’t have a clue about this. Very few very few Drs here know even what it is. I sent a Proclamation to Our Governor John Bell Edwards to please proclaime March 2918 as Awareness Month to help get the word out still waiting to hear back.This disease destroys your life.its not cheap to have, so much is needed in order to take care of some one with this and not a lot of resources out there to help with it!

Its not "all in our head".

Doctors including Neruros know next to nothing about MSA. I find that apalling. It is time that the word gets out to the teaching hospitials about it. I'm tired of having to go to an emergency room for a problem that flares up and no one knows anything about it and their data base still calls it shy-dragger and has half a page of nonsense. We need to get information in their hands to save some lives. I have lived with this a long time and hope to continue to do so but the doctor cumunity needs to help more. Sorry for the tpying but its hard to do one handed.

Our family is very supportive of my choice to utile "death with dignity", have it in writing u

I never realized how much pain,he was in at the time of his illness, and I feel once he got the feeding tube he started to give up.

Recently diagnosed. Please help to save my life.

Patient was misdiagnosed with Parkinson's in 2006. Was diagnosed with MSA in 2010. Passed away in 2013 due to inability to either swallow or eat. Did not want feeding tube. Also had chronic bladder infections the last four months.

There is a lot of confusion regarding symptomology of MSA. More education amongst medical professionals is needed. Cognitive dysfunction and memory impairment makes it difficult to be able to express yourself and be specific about symptoms etc. need to have someone with you at medical appointments.

Because this illness is rare and presents differently with each person, neurologist in particular seem to have no knowledge of it and are unable to make a diagnosis.

Improved education of GPs in MSA required

In our country (South Africa) there doesn't seem to be any follow-up post diagnosis. My husband was finally diagnosed after 18mths of tests, scans, MRI's and second opinions, and then basically sent home and told nothing more could be done. We ( family members) did our own research online, joined an MSA support group on Facebook, thereby getting in touch with other MSA patients in our country. Our support group is made up of friends & family who come on a rotational basis to do speech or exercise therapy with him, or just to chat about work, his previous sport (squash) or news events.

I am experimenting with a variety of integerative therapies in a controlled manner. Understanading possiblel causes helps to direct the pathway one chooses. I do not know that answer but possible considerations are pleomorhic organisms, previous injuries, exposures to toxic , etc. When the symptoms started I had Lymes disease. I also had neck problems as previosuly stated and I also worked with some chemcals in earlier years. In addition I have had a hair alalysis done and it came up with some heavy metals . I believe there is something to detoxing the system that I will be doing. A friend of mine who has MSA once told me the only time she felt disease free was when she had a colonoscopy. Something to think about!

My mother lived in Belfast N. Ireland We feel no one knew much about this Disease only one consultant even the middle aged family doctor had never heard of it, it was very frustrating knowing there was something wrong but no one knew what or what to expect next we her family got most of our information on line, my mother couldn't except this illness her whole personality changed she was very depressed and we felt we got no support from anyone because it was so rare they couldn't tell us what to expect next, the worst part for her was the bladder and bowels problems and for us it was knowing how much thickener to put in her food we were scared of her choking all the time, she died in her sleep she was snoring loudly then it just stopped and she was gone.

The beginning started with an infection, at which time the bladder issues started. At the same time, he became hyperthyroid (like hasimotos) and then hypothyroid. i would describe flare ups almost like an autoimmune disorder. My husband appears to be calm, but it is almost with the stress of situations, I can tell the symptoms are increased (bladder issues and stability). I do feel like when his diet is high in carbs (even natural carbs) he tends to become more symptomatic.

I'm struck by the differences in presentation and outcome of people with MSA-P vs. people with MSA-C. I think this makes it confusing for doctors, and patients. As a MSA-P guy who has clearly been so far dealing primarily autonomic related issues (as opposed to movement), I hope the autonomic disorder folks are sharing information across disease silos. I notice on Michael J Fox recently a focus on "the other issues caused by PD, and they list out all my MSA-P autonomic issues...so again, the confusion and the need for cross-silo collaboration.

More research needs to be done and brain donation is very important. Also to donate my brain in Canada where I received my dx, it would cost my daughter money. If we are willing to donate our brain, there should be no cost. Awareness of this disease is very important! A good support system is important. Doctors should tell people more about the disease when dx'd. I was told the day I was diagnosed that I had MSA. I would end up in a nursing home and go home and look it up on the computer. Written materials need to be available through your neurologist. I found this a very stressful way of learning about MSA. I have also offered myself up as a teaching patient for the medical studies of neurlogists at my hometown university

My father had fever and cough in his last 2 days, he was getting better before that for the past two months.

More info needs to be available

Doctors don't seem to know much about this disease

His symptoms began 15 years ago when he was 75. For him 75 is not old. Paxil and Florinef kept him stable and active for 10 years. At age 85 I noticed that his considerable muscle mass disappeared seemingly overnight but probably within 2 months. He began to have strange sensations in his legs. His determination to find out what it was took him on a 3 year journey of discovery through a dozen doctors, and straight into MSA-C. He's 90 now and just last month he was helping my daughter lay sod. His longevity tells us not everyone dies within 4 - 6 years.

How does a person prepare for what is to come next with such a disease? We all know that sometime we are going to die. Not knowing you have symptoms to finding someone dead with a rare disease is a lot for anyone to handle! Even a well person.

there is a lot of focus on the physical issues of MSA but i believe that there are cognitive issues that need to be addressed. I believe that there are issues with impulse control, executive planning etc that patents and carers would benefit form information and support.

His first diagnosis of cerebellar atrophy was in 2000. A fall resulting in a fractured hip put him in a wheelchair in 2008. He has a very strong will to live and continues to enjoy life despite being in the late stages of the disease.

Disease has so many negative features it's difficult to explain all that happens. Every symptom gets worse over time and for the patient and caregiver this is the biggest challenge.

When airlifted to a hospital in the city, I had to educate the doctors there as to what MSA was and the reason he suddenly stopped breathing. Doctors could not understand why he could not breathe yet his heart, kidneys and other organs were healthy and functioning. He could also respond to them when asked yes/no questions despite being intubated!

We are so desperate in Australia to find a Neuro that will accept MSA or any Parkinson's + condition without feeling that because it can only be 100% confirmed post-mortem, that they would prefer to sit on the fence. I have passed on the link to the "Second Consensus Statement" to specialists that were involved in my sister's treatment to help make their own decision, but I have felt that it was a waste of time & my remarks were always brushed off. I met & dined with Prof Gregor Wenning & his colleagues last June in Sydney at the MDS Conference & I am so proud of all the work he & his team do in trying to find a cure for this horrid disease as well as all the other researches worldwide. I will continue to do my utmost to raise awareness in Australia, now more so in Maureen's honour. Thank you so much for all that you are doing & I truly hope that in my lifetime I get to see a cure if not a treatment to help MSA patients. Regards Linda Williams

I am willing to donate my brain to find out what caused me to have this terrible desease and to help find a cure to prevent others not to have this.

My mother was initially diagnosed with Parkinson's Disease at age 41 (after beginning to experience shoulder pain, finger tremors, and incidences of tripping and fainting). It was 3-4 years later, after rapid progression of the disease, that she was diagnosed with Shy Drager Syndrome. From the time of her original dx of Parkinson's until her death was 7 years. She spent the last 1.5 years of her life in a skilled nursing unit. She had a tracheotomy, iliostomy, urinary catheter, and feeding tube. She was unable to speak and was confined to bed.

As caregiver, I appreciate talking to others who have experienced caring for someone with MSA and giving me some insight on what to expect or their experiences. It's ashame we do not have more neurologists interested in caring for MSA patients. Our primary care doctor admitted he didn't know a whole lot about MSA but would be with us thru the journey. For this we are thankful!

In my husbands case, progression seemed slow and manageable for first three years. Progression was much more aggressive last two years. I would recommend getting as much help as possible. Also, research the condition and make sure the patient has a good neurologist. Ask as many questions as possible. Educate yourself the best you can especially if you are the caregiver. Be as patient and calming as possible with your patient. Although this disease is probably just as hard for the caregiver and it's really easy to lose your cool sometimes. Keep things in a steady routine daily as much as possible. And for caregivers, be prepared. Life span is on average 7-10 years from diagnosis. I lost my husband at 5 years.

My husband asked for Death with Dignity and it was denied to him because he had a mild dementia diagnosis. PRN pain mediation is NOT appropriate for MSA patients, especially when they cannot communicate the need. If Methodone is used, be sure to keep the patient of Tizanidine or increase the Diazepam otherwise severe muscle spasms, i.e. full body charlie horse, can occur with MSAp patients.

medical staff needs to help prepare people and get much more info on disease.

live life fully & deal with complications as comes.

This incidious disease is like living through hell on Earth

Medical teams, including family doctors and ambulance personnel need to be informed of this desease

At the time Shy Drager Disease was diagnosed as an "orphan disease". Thus there was little interest in research to find the cause and treatment. I am glad to see that there is more awareness today and that survey's are being done. I would be very interested in the results of your research and surveys. Diagnosis for my husband took many years. He was initially diagnosed as depressed. He was frustrated with that diagnosis and said he was depressed due to the fact that he did not feel good! He had major unnecessary surgeries at the same hospital simply because doctors in their separate specialities had narrow vision and did not look at the full picture. they focused only on his presenting symptoms that involved their specialty. Prostate surgery at age 46!! Wouldn't that young age, raise a red flag that perhaps something else is going on?!! Then during surgery they remarked about how small the prostate was. Unfortunately the results of the surgery were that he never regained full control. One of his first signs of SDS was impotence. He went to see a urologist. I had called the urologist in advance to tell him of the concern. The urologist (a male) was too inhibited to talk about the problem with my husband. When I called the urologist afterwards, he said he did not bring up the subject because my husband did not mention it!!! I could go on for pages about incompetent doctors, none of whom would take the extra step to put all the pieces and symptoms together to see the whole picture. He was finally diagnosed at Mayo Clinic via a simple sweat box test in addition to other tests. But the sweat box was the definitive diagnosis.

Prepared to donate organs .

Our mum has MSA, me and my brother are so scared...

Need to raise awareness. First Neuro at Cleveland Clinic suspected a form of dementia.

Thank you for helping fight this terrible disease.

Multiple disciplinary teams need to know more about MSA, Found very little knowledge even with the GP, physics, etc into treatments or even symptoms. It's a very isolating disease because of this as the people that should be able to help don't know how too.

Jill had stem cell therapy in 2006 and repeated in 2008 . After 1st treatment we noticed several improvements in walking ,balance and speech - the stem cell therapy included an intensive exercise program. On return to Australia in 2006 we converted our garage into Jill's Gym and continued to use it daily until she died. We had a professional physio therapist twice a week, a speech therapist once a week. Jill participated in a Parkinson's speech program at a local university - we continued the speech exercises on a regular basis .

It's important to note that the vast majority of us still have our thinking

There is not enough knowledge in the medical profession about MSA. Neurologists know about it but regular GP's or doctors in hospital pretend to know when they don't know enough and DO NOT LISTEN TO THE FAMILY. Awarness need to be made so it doesn't scare people. The person with MSA needs to be treated like a person and treated like they were treated before. Those with MSA are still there, they understand what is going on around them. The still get upset if they are talked about in front of them regarding them.

Something is needed for sure . Hospital staff have no idea what this is .I wear a medical bracelet just to be safe , even outside the operating room waiting for a kidney stone to be removed , the nurse had no idea what MSA was, a little scary.should be a memo sent to every hospital world wide . I sure I make it sound easy ans its not

We spent almost all of our father's savings to provide 24 hour care for him. We did this to provide him with the best quality of life possible and to delay admission to nursing home level of care. It was very difficult throughout his illness assisting almost all providers information about MSA from the level of physicians (other specialists included) to nursing and caregivers. Great strides have been made in increased awareness of ALS, it my hope that MSA awareness can be improved as well. I feel that my father would have had an earlier diagnosis or at least been referred to a neurologist by his PCP or cardiologist. An earlier diagnosis would have allowed for more financial planning and less medical crisis intervention.

I have no idea how to specifically donaye my brain locally Putting in place a "do not revive" order and approptiate powersof attorney

I am trying to raise awareness of Multiple System Atrophy in Australia - I would be interested to know if any Australian neuros have shown any interest thank you for this awesome survey

My husbands case started with impotence which we never went to drs about..then urinary problems which was checked out for prostrate cancer and when he was told he was fine the urologist said it could be a wiring issue...that was a very profound statement which turned out to be true..but he said it in passing..2 years later we found out it was a wiring issue when he faltered at writing is signature then getting tired and his walking gait changed..then he was diagnosed instantly with MSA. Not parkinsons..

I don-t know how she has lived this long. Mind she is a fighter and wont give into it

Pip is in the final stages of his battle. He is in bed 24/7 and has little quality of life. I hope your research helps. If you have any questions feel free to email me. Bev

It is a sad state of affairs when a family, who basically sat on the sidelines for over a decade, comes in and muddies up the end of life for a patient and her caregiver of over 10 years. The family was NOT educated or informed of the many facets of the disease, and interfered with the patients last few weeks of life. They were completely unaware of the cognitive issues she had, the inappropriate thinking and actions she was exhibiting, and her failing mental capacities.

I was first diagnosed with OPCA, olivopontocerebellar atrophy, later called MSA, multiple system atrophy. At first my doctors prescribed various drugs to find out whether they would help. None did. When I recognized that my driving was being affected I stopped driving a car, and that was hard to get used to. I appreciate the computer and Internet, which keep me in touch with friends and the world in general.

I see evidence of increased awareness of MSA. It may be because we're living that world more. But I also believe there are signs that physicians are getting smarter about identifying the disease sooner.

Medical Marijuana has helped with tremors, pain and nausea !

Exercise as much as possible and move about even if you are bedridden like I am you can still Move around in the bed and there are exercises you can do in the bed. Use a walker as much as possible and wear a gait belt so your caregiver can walk behind you and hold on to your belt. If you Have falls don't try to use a walker alone. You can still fall using a walker without assentense.

I have seen 5 neurologists and none of them give you any information to use. If it was not for the. Internet I would have been lost.

He doesn't receive any help from the state/ insurance, except the specific medication. There is no specialists combined action to face the disease. His condition now is very delicate, but has a strong heart. He doesn't want to die, he (still) expects to be cured!

MSA is terrible, it is really pissing me off because it is hard to think about the future in any positive format. So I am becoming depressed which is really bad. Lucky I have a beautiful wife and 2 very cute Mitsu puppy dogs who help me smile and be sort of happy

Medical industry and doctors need to learn more about this awful disease. More than several times we (the family) had to actually educate doctors, helpers, hospital & nursing home staff about MSA

None of the medicine for Parkinsowork for him

Most difficult is finding a good Neurologist willing to treat MSA... and help us get more help to understand this horrible disease. Most neurologists who treat MSA are 3-6 hours away. Some PcPs reluctant to take it on. Not enough awareness, education in hospitals, doctors, nurses, CNAs, and not enough trained professionals to understand how to treat or help someone with MSA. We were even turned away by an ALS Neurologist at the Movement Disorder Center in Charlotte NC. Said they do not treat MSA patients!!! Thought their oath as doctors prevented them from refusing treatment. Thinking about getting referral to Vanderbilt University for confirmation and more help in understanding what "not to do" and medications to stay away from. NEED for Neurologists willing to treat patients with MSA. And hospitals to train their personnel about MSA.

It seems that those of us with primarily autonomic dysfunction symptoms are difficult to diagnose since the revision and removal of MSA-A. I went to 3 different movement disorder neurologists who didn't want to classify this as MSA initially since Parkinson symptoms were very mild. I wasted a lot of time, and money trying to be diagnosed only to be finally diagnosed. Now being told I can expect to die at anytime. I wish they would reconsider the classification system again.

I would like to sign up for clinical trials to help others with this terrible disease.

I would support a person with MSA who desired no or limited treatment but not assisted suicide.

In Australia at least, few people have heard of or understand about MSA; few Medical Staff at Hospitals are not well informed and some doctors have only a vague notion of this disease Mostly they think it is Parkinson's Disease. .

I don't really talk about it much as people feel really bad then uncomfortable cause they don't know how to react.

I'm glad to finally be able to contribute to a survey like this. My husband was able to donate tissue and eyes. Donation of brain would have been complicated and costly.

I am his wife. I noticed since the beginning something was wrong (Jan 2011). Since we were still dealing with my son's physical assault I could not pay too much attention to his symptoms. However, we visited a doctor -not neurologist- and all the blood tests were fine. As he continued showing mainly physiological symptoms and some of cognitive area, we visited a psychiatrist thinking maybe on bipolar; but he said right away it wasn't that. Not until our need to go to ER, I started pushing doctors to go deeper on his symptoms. I've worked for more that 25 on educational/neurological fields and I knew something was going on; something big. Even though I had to push our neurologist, there was a time in which he told me that yes, something was progressing but not until the fMRI last Nov 14, he felt he could tell us it was MSA. I haven't known of anyone with MSA in Mexico. We know there is no cure, but we've been focusing on living day by day, enjoying everything we still have, and he has been working with healing on the emotional and spiritual path, so when the time comes, he is ready to leave on peace. This approach of the disease has helped tremendously. His anxiety is rarely seen, and he hasn't had any pain at all, which is great for him and for all of us.

Many Doctors, Nurses, and other caregivers we have encountered along the way have never heard of this disease in this area of the country. It was not until my father saw a geriatologist (sp?) that MSA was even mentioned to us. He has not seen a neurologist since diagnosed. Only his GP has assisted him and our family throught this terrible disease. So really there has been no support at all. I really think that with the population aging, we need more geriatologist available. Unfortunately because my Dad has metal fragments in his head, MRI's were not available to us.

This is a hideous disease. I owe my longevity to the practice of Taoist Tai Chi which I do 6 days a week for up to 4 hours a day. Prior to starting the Tai Chi, I was in a wheelchair if I had to walk more than about 30 feet. After 2 years of Health Recovery Tai chi and regular Tai Chi I put away my canes. After 3 years I sold my wheelchairs and scooter. Perhaps I could have saved them as I will need them again at some point but I was ready to fly on my own before succombing to having to use them again.

Eleven months after my diagnosis after seeing three different physical therapists, I found an exercise coach who challenged my strength and balance intensely. I also took a gluten cross contamination array 4 test that indicated I was highly sensitive to gluteus, dairy foods. After four months of rigorous work and new eating habits, I started to experience small improvements. The improvements have continued to the present. No more balance issues, brain fog, gained control of my bowel and bladder, strength and stamina greatly improved. I receive comments all the time on how well I look. I plan to continue modifying me exercise and eating habits to hopefully keeping improving.

Please look at b12 please look at fast food eating habits

Please check history of migraine relevancy and possible migraine pattern amoung MSA patients.

I have read that a history of low cholesterol is correlated with Parkinsons and presumably other movement disorders. My husband was told to "go have a hamburger" after lab work done in his forties. I just read the cumulative results of this survey and am a bit distressed to see everyone's email addresses. This breaches the confidentiality that was promised. Can you change this?!

My wife, within 3 days of her death, literally went 'round the bend' mentally. She attempted to obtain a divorce, enlisted the assistance of two visiting friends and her son to remove herself from our home, telling them that I wouldn't let her do what she wanted to do with her retirement account, and went back to Ohio from Florida, after having received the medical OK from Hope Hospice in Fort Myers, Florida, to travel by air. In my considered opinion, the trip killed her. She arrived in Ohio and was admitted to a hospice facility at 4:30 in the afternoon, and died the following morning at 6:30. For several years prior to her death, we had an appointment on our calendars every Friday, to work on wills and estate planning, and she perpetually put it off. The day she left, we had an appointment to see an estate attorney to resolve all the end of life issues, and she bailed out on it. My cautionary note for all affected is that the cognitive difficulties will become virtually insurmountable at the final stage of the disease. Any and all end of life decisions should be made as far in advance as possible, in writing, with professional assistance, and shared with family members.

EDUCATE PATIENTS.

I told my Neuro psychiatrist I had this all planned out and that my family therapist and all my doctors new this is my plan. She wanted to hospitalize me for a month or so for evaluation because she . Saw having such a detailed plan a sign that I was suicidal. I lied my way out of the admissions process and left. I fired her.

She has had symptoms for at least 3 years. Most of which was low key stuff, nothing that would cause alarm and all easily explainable. For instance, pain across her shoulders (she has mild arthritis), she suffered night terrors and poor sleep (but drinks too much caffeine and smokes), an itchy head (we thought this was sensitivity to shampoo and kept changing brands), vision problems (we renewed her glasses prescription). Then very quickly over a few months she was displaying a mild slurring of her speech (we thought her heart problems had returned), drop in blood pressure (again, thought this was a return of heart problems), slowing of her gait (she exhibited this just after her heart attack and it took a long time to fix it, we thought its return was due to more heart issues and her age - after the heart attack she developed asthma, not something she had ever had before). We saw the GP and he said her heart was fine, by now she had her a couple of falls (which she had explained away because she has small dogs who are underfoot).

Awareness is the biggest obstacle for the patients. The medical community, social worker community and the general public seems to have confusion with MSA and MS. There seems to be a lot of 'grey' areas to this illness and comments from the medical professions 'let's try this' to make you more comfortable. Why isn't there a definitive protocol for the patients?

It is important to acknowledge, examine and assess the role of toxins and traumas in the development of MSA, because knowing the prior history may affect the treatment plan. IF a doctor does not ask, patients should volunteer the information.

a conscious decision was made by patient to stop nutrition - taking only liquids to wash down meds. Body expired within 3 days at home surrounded by family. Everyone was comfortable with his decision and supported him in it.

I started having urinary issues/ED issues prior to 2007. I was seeing an Urologist and on several medications by 2008. MSA (and CJD) were first discussed with me in 2014.

Please share your findings, especially with the medications. A 3 years PT, stretching and strengthen program helped greatly. It allowed for freedom away from walker and an occasional cane use for quite a few years. Choose wisely which battles to take on and when to take a step back to rest. MSA social media helps everyone dealing with this dreaded disorder.

I'm happy to be contacted regarding any of the above as needed.

It's awful

Person concerned resisted full nursing care in an aged care facility as long as possible until his cats were looked after together. He was a university educated single man who was very independent until almost suddenly struck down by MSA symptoms. He became very cynical with life, depressed and no longer wanted to live.

We have belonged to support groups in 2 cities. An informal survey of participants in the group revealed most members in each group had suffered either head injuries and/or toxic exposures. Physicians don't ask about these types of incidents when taking health histories. One neurologist told me shamefacedly, "Well, we ask about things over which we might have some control." Not helpful.

1. Regarding the last question above. I believe the patient has the right to refuse certain treatments/procedures which may lead to an earlier death. I have strong feelings that a patient has no right to take action to end one's life at will on own or having someone else assisting them. 2. In my opinion, there is too much self promotion and ego amongst all 3 areas, resulting in lack of cooperation and slowing the desired outcome. 3. I'd like to see an effort for MSA to become a subset of a larger better funded Parkinson research.

Time Line: Loss of smell occurred when quite young,while in his 20s. REM Sleep Disorder began to occur in his early 30s and became increasingly disruptive to sleep and to partner and precipitated relationship with first neurologist. Soft, flat voice began to develop somewhere in there too. Impotence and bladder control issues not related to prostate began occurring in his 50s. Dreadful accident and severe TBI occurred in his mid 60s with some cognitive deficits and slowing as a result. Regained significant cognitive abilities due to plasticity of brain. First neurologist suggested possibility of Parkinson's 4 years before third neurologist/movement specialist diagnosed him with MSA. Diagnosis was confirmed with tilt-table test.

I have found that my diabetes and pain meds tends to predispose some of the movement disorder specialists to want to ascribe most of the symptoms to diabetes. My nephrologist knew that my extreme hypertension was likely an autonomic issue but didn't know which way to go with the info (at the University of Washington) so wasn't diagnosed. Only the REM sleep disorder and a few other symptoms caused doctors to go if different directions. It was a physical therapist who found the cogwheeling.

We are getting close to the point where we need to make big changes in our home and in our lifestyle. I have no idea where to start on this. I am tech-savvy, but I have no idea how to find resources and information in person or online. I'm not even sure what to Google. I've Googled MSA, etc. but have not found a lot of practical information. I haven't yet asked the neurologist directly about it, but I will. I also wonder about how to finance changes in our home and lifestyle.We also find that few people, even in the medical field, are aware of MSA.

Lost job, Health insurance and Drivers license in 18 months Have a hard time to start new.

I believe that there needs to be much more done to increase the awareness of this horrific disease. I also believe that there needs to be more training given to medical professionals that this disease even exists. I have found that there are a great many medical professionals that have never heard of this disease. I know that it takes a great deal of money to get the word out and to educate people about this disease. I firmly believe that all of the organizations that are out there that have anything to do with MSA need to consolidate into one large group. The more people there are in a group, the better the response. Having many smaller groups doesn't garner the same attention.

Our family struggled to find resources to help Hal. The inability for him to receive Medicare immediately like ALS patients was very disappointing despite our efforts with local agencies and several members of Congress. Hal wanted to donate his brain, but when it came time to do so, the process was impossible! I am a physician and could not get anyone to help me find someone to harvest his brain. Agencies tried to help me, but I was the one who had to contact someone to do the harvesting and go nowhere until U. Miami got involved. They took care of everything and eventually an agency that had turned me down (Jefferson Parish Coroners Office) did the harvest for Miami. The "Prion Paper" had just come out and I was flatly denied by the local coroner in East Baron Rouge Parish because he felt his staff would be at risk for infection. VERY frustrating experience! If agencies want these brains for research, more help needs to be offered for the families to facilitate donation. I started the process well before Hal died, thank goodness, and Miami put all in place before he died.

My symptoms started the next day after a shoulder repair surgery. Before that day I had no symptoms.

What has been frustrating is that it has taken so many years and back-and-forth exchanges between doctors--some of whom thought my husband was faking symptoms and some of whom did not seem to want to give credence to symptoms reported to them by family if they could not see the symptoms themselves. My husband was verging on need of a wheelchair before he had a bad enough day at a doctor's office that it finally got the doctor's attention as a serious concern.

Early Advance Directive Care & Power of Attorney legally drawn up while persons involved are able to make these decisions is a very sensible move. In South Australia very few people have come across MSA & confuse it with MS. Parkinsons Australia issue an excellent folder & taken every where. MSA Australia & New Zealand on computor really helpful.

Need to have access to a neurologist who can see the patient on a regular basis.

Other

Thank you for taking the time to complete this survey - your input is invaluable for those involved in MSA research, education and awareness. We welcome your comments about this survey - please enter them here or via dataMSA@yahoo.com

Excellent Survey

Excellent survey

Please feel free to contact me if you need further information.,there is so much more to say than what is here. This is very well done. I was my husbands caregiver 24/7. Thank you! I pray for a cure for this terrible disease.

I am very interested in what your findings are so any inforamtion that you can forward me I appreciate. Thank you Rickie Robinson

I am so grateful for this survey I hope anything I have said will help, my grandfather sold fruit and veg for a living and my mothers house was always full of boxes of fruit I'm just saying this in case there could be a link with pesticides or something, thank you.

I think this needs to be done / and I would be interested in reading the responses. we were given this survey by a friend with msa.

Thank you to Bill for his amazing effort to put this invaluable survey together. I'm sorry it took so long for me to get to it!

Great job Bill and thank you for your initiative!

So glad to see this survey. The questions, the prompts and the format made completing this survey a rewarding experience for both of us.

Glad to see this being done! Should have also added what jobs and /or professions the patient had. Also if any of the patients had ever lived in a foreign country.

My husband was condemned to suffer in physical and emotional agony. My husband was NOT adequately medicated by Providence Hospice for the subsequent muscle spasms after being segued to Methodone. We begged that the PRN orders for morphine be changed to hourly doses, and our request was denied. MSA patients need to be heavily medicated for pain and given high doses of Diazepam for muscle spasms and anxiety. When they are unable to speak and the family is not present to request additional medication, these orders should be automatic so the foster caregiver can feel comfortable medicating the patient properly. I'm happy to discuss this with someone any time or testify or any thing else to advocate for proper MSA patient care.

I want delighted to do this survey, first one I have participated in or even seen, I hope it even gives u a little help in finding a way to make life a little more bearable for people with MSA.

Very informative!! Now help us!!!

yes you were spot on with the lists of symptoms etc. there could have been questions towards the end about those who are still living with it after many years, they seem to only be about those who have died already. Otherwise a good survey well done.

I believe this survey is invaluable in recording patients and caregivers experiences with MSA. I hope it becomes a book, or at least a serious pamphlet, guiding those who are uneducated and uninformed of the disease, through the manifold difficulties both patients and caregivers must navigate. It's too late for my wife and me, but not for those suffering through similar experiences.

Thank You for your efforts !

Contact me for any future surveys or questions at sonschild@yahoo.com

My biggest issue is not really knowing what is going to happen and when and this leaves me feeling quite frightened. Thank you for all the work that you do.

Thanks, it's scary.

My mum is very early in her diagnosis and she has had mild symptoms for the last few years. If you would like to do a follow up in the intervening months/years, please feel free to get in touch.

One of the few surveys I've seen in recent years that wasn't limited in scope to obtain useless results or questions designed to support a predetermined agenda. Good job!

I feel like someone cares about our experience now. Good luck with this.

Thank you for caring.

thank you for doing this

My husband had been the picture of health his entire life. Never drank, never smoked, worked out 6 days a week. Always had a desk job. Overall good guy. Excellent husband and father of 2. 6 ' 180 or so his entire adulthood. MSA has rocked our world. No explanation at all. Wondering if it is inherited. Aunt passed away from "ALS" and 80 year old father passed away with MSA symptoms. You are welcome to contact me (us). Thank you. Cee Cee

MSA SUCKS!!!

My brother was healthy,strong and started with balance issues,we thought he was clumsy But then the tremors started and because he refused to use a cane,he fell and broke a hip.Then he started a walker,lost his balance and broke the other hip. The neurologist that was treating him had never seen even a case of Ataxia. She educated herself and was sure it was MSA because the symptoms were so rapid. So she sent him to Emory to see a doctor that treated only Ataxia and balance problems. He confirmed he was sure it was MSA. Be sure you see doctors that are interested and make sure they learning about your case.

Thanks, we need this information. Most of my medical team didn't even know what MSA is until I brought it up.

If any other information could be helpful for your study, feel free to contact me from the E-Mail listed on this Survey Form. Thank You for taking this Survey so that others can gain knowledge of MSA/

Please Help. . . !_!

Hope to be of help

Thank you so much for helping to raise awareness, hopefully in the next few years there will be a break through with research and we will be a step closer in finding a cure. I would also be interested to know how many participants in this survey were from Australia? We are yet to met another person with MSA

This servay will not accept Europe so selected Australia to complete servay.

I am so thankful that these groups are available with support for us with MSA.

I have reviewed our answers

Thank You.

Thank you for the opportunity to participate in this survey.

Further study needs to be undertaken into the long term effects of exposure to chemicals/solvents and jobs such as welding, with regards to diseases like MSA

This could be a very valuable survey for MSA. Thank you!

Please see the above.

I was more than happy to fill out this survey. I hope to receive some news from it in the future.

Thank you for doing this research into MSA. As a sufferer I really appreciate it :)

I'm so glad you are compiling this information and I hope we are able to receive a copy when completed Thank you!

End of Survey

dataMSA
Worldwide data collection
for Multiple System Atrophy
USA
info@datamsa.com

data﻿MSA©﻿﻿﻿﻿

Global Data Collection for Multiple System Atrophy

dataMSA Survey for Multiple System Atrophy

Summary Report 2014-2019

5 Year Survey Period: 03/2014 - 03/2019

Survey Closed: Number of Participants: 832

Participants' responses are unabridged, unedited.

Background Information:

In which country/region does/did the individual reside?

At what age was the individual diagnosed with MSA?

If the individual's diagnosis of MSA was not administered by a neurologist, please state how the diagnosis was formed:

If the individual was diagnosed with conditions/illnesses prior to receiving a diagnosis of MSA please state the condition(s)/illness(es):

Symptoms:

At what age did the individual first notice symptoms, later attributed to MSA?

Please indicate the first/earliest symptom(s), which caused the individual to seek diagnosis:

Please indicate all symptom(s) which the individual experiences/experienced since receiving a diagnosis of MSA:

Please indicate events which cause/caused the individual's MSA symptoms to worsen?

Please list other events which cause/caused the individual's symptoms to worsen:

If yes, what are/were the strategies/interventions that help(ed) reduce the individual's symptoms?

Please list other strategies/interventions that may help/have helped reduce the individual's symptoms:

Medications:

Has/Had the individual regularly taken any prescription medication prior to or after diagnosis of MSA?

If yes, please list the prescription medication(s) taken regularly by the individual:

Has/Had the individual regularly taken any over-the-counter medication(s) prior to or after diagnosis of MSA?

If yes, please list the over-the-counter medication(s) taken regularly by the individual:

Neurological Care:What is/was the nature of the neurological care the individual receives/received during these visits?

If 'Other" - please describe:

If the individual participated in clinical research, which agency/group oversaw the study?

If the individual participated in clinical research, what was the purpose of the study?

If the individual participated in clinical research, what were the outcomes of the study?

If the individual participated in clinical research, please describe the individual's satisfaction with the study experience:

With regard to possible MSA-contributing factors, which of the following did the individual experience prior to receiving a diagnosis of MSA?

Please tell more about the contributing factors stated above:

In the past/last year, how would you describe the rate of progression of the individual's MSA illness?

Please add any comments related the individual's rate of progression in the past/last year:

Living Conditions:

If the individual does/did not receive adequate support to live comfortably, please indicate what is/was lacking:

Transition Issues :

If 'other', please state:

If the individual has/had made arrangements to donate his/her brain for research, please identify the agency to which the donation was made:

Your comments:

Please feel free to add comments, observations and experiences which you feel may be helpful to others who research, educate and raise awareness of MSA:

Thank you for taking the time to complete this survey - your input is invaluable for those involved in MSA research, education and awareness. We welcome your comments about this survey - please enter them here or via dataMSA@yahoo.com

End of Survey

dataMSA©