Background Information:

What is/was the individual's gender?

Diagnosis Data:

At what age was the individual diagnosed with MSA?

In what year was the individual diagnosed with MSA?

With which type of MSA was the individual diagnosed?

How long did it take for the individual to secure a formal diagnosis of MSA?

How many neurologists did the individual consult during the diagnosis process?

Was the individual diagnosed with any condition(s)/illness(es) prior to receiving a diagnosis of MSA?

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

Parkinson’s

Crebellar atrophy

Parkinson's

Ataxic Gait

autonomic neurothopy

We found that he also has Simmering Myeloma

Primary lateral sclerosis

Malaria

Parkinsonism

Cerebellum atrophy

SCA, Ankylosing Spondylitis

Parkinson's

Arthritis

Cerebellar atrophy

Possible Parkinson’s, high/low blood pressure, syncope, sleep apnea, asthma

Imbalance due to blindness RP or pressure from benign brain tumor fibromyalgia

Parkinson’s disease Addison disease

Fibromyalgia High Blood Pressure Sjogrens

Movement Disorder, then Parkinson's Disease

Cerebellar ataxia

POTS, CFIDS

Only high cholesterol. Had taken Lipitor for 15 years when dx with MSA.

FXTAS/cerebellar ataxia

Parkinsons

Parkinson’s disease

Spinocerebellar ataxia type ?

Parkinson's Disease

Afib, Heart Failure

Parkinsons Disease

hydrocephalus by gerontologist (CT/MRI/spinal tap)

Parkinsons Disease, chronic obstructive pulmonary disease, sleep apnoea, asthma, under active thyroid, spinal arthritis, arthritis, cardiac dysrhythmia, hypotension, borderline diabetic

Amyotrophic lateral sclerosis, Parkinson plus syndrome, cevical hernia, depression, fatigue, Parkisonism due to Fluoxetine, Menopause

Autonomic disfunction , orthostatic hypotension, thyroid disease, cowdens disease, prostate cancer, lung cancer, chronic headaches, chronic body pain, sleep apnea, acting out dreams,

no

Hypertension and Barretts Esophagus

Cerebellum ataxia

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:

Are/Were any cycles observed with regard to periods of worsening of the individual's symptoms?

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

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

Are/Were there any strategies/interventions that help(ed) reduce the individual's symptoms?

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:

no salt and no red meat

Acupuncture helped maintain blood pressure for about 1 year then stopped helping

Low dose naltrexone at night Skullcap tincture for tremor

Ubiquinol, bydureon,cbd oil, glutathione

Sleep and rest

Lifting her legs and putting her head down.

Seeing grandchildren

Exercise

Sleeping, changing dosages of blood pressure meds, to lower or raise bp, positioning bed higher or lower.

Tropsium Chloride for urinary urgency

No fluids, no exercise, doing nothing

Better understanding of the disease

LlLyrica helped the burning of neuropathy in extremities

Laying down to reduce dizziness helped in the beginning

Riding my horse - relaxes muscles and emotions. Keep moving and doing something creative,, get enough rest

Family visits , rest

Sleep.

resting as needed

I work more

Activity redirect when stuck or frozen

music combined with movement therapy - stationary outside activities

sleep

IVig

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:

Levuthyrixide, midodrine, sertraline, clonazapam

after diagnosis, madopar 3x a day, complex vitamins 1x day

Effient, pravastatin,sertraline,Lisiniprol all prior due to heart attack at age 38. Fludracortisone started November 2019

Carbidopa levodopa

Iron Atenolol

Florinef mirtazapine amiodarone

Midodrin, florneff, baclofen

Betmiga, bydureon

Miralax, alfusin, coQ 10, riluzole. Participating in MSTAR study, don’t know if he’s getting drug or placebo

Unsure of names

Paracetamol Gabapentin 4-Aminopyridin Melatonin Ovesterin Antihistamin

Levocarb ; entacopone; pramipexole; florinef; myrbetriq; zopiclone;

Forvent abd Sereflo for COPD

Atenolol, HCTZ, Norvasc

Levodopa

Ubiquinol, exendrin, glutathione

Biohaven stuffy drug

Sinemet and midrodine

Northera, chlonidine, xarelto Zoloft

Zyrtec

Clonazepan for RBD (effective), Tropsium Chloride, Remeron for anxiety/depression

Cymbalta tramadol amdolipine

Amantidine

FlorineF, Gutron

Blood pressure medication

Bystolic Nifedipine Sertraline Mirtazapine Clorthalidone Pravastatin Lyrica

Tamulosin

Cinemet

Steroids. Now starting IVig

Too many to list

Hiprex, amitryptakine, madopar

Procrit, Clonazepam, Beta Blockers

Took Lipitor prior to dx, not now. On hospice currently. Tried carbadopa/levodopa without success. Northern helped some to regulate BP for a time. No longer takes. Takes flexaril, macro-bid, IBU and occasionally a stronger pain med.

FlorineF, Lyrica, Midodrine, Clonazepam

amitiza/linzess/lexapro/vit D3/multivitamin/nexium/klonopin/atropine drops SL/advil PM

Kinson

midodrine

Quinindine/Robitussin tablets = Nudexta,

Hiprex for bladder, metformin, simvastatin,lasix, potassium, meloxicam

Rytary, Fludrocortisone, Midodrine, Gabapentin

Carbo levodopa

omeprazole, xarelto, prozac

Gabapentin, ropinirole, celexa, sucralfate, pantaprozole, fioricet, tramadol, ambien

Levodopa/Carbidopa; sertraline; Florinef

Rytary. Mirapex. Nudexta. Klonopin. Sinimet. Strattara. Botox for my bladder.

Thyroxine, frusemide, levodopa, antidepressants, paracetamol, cetalipram, inhalers (including corticosteroids), amoycillin, statins, morphine patches.

Levodopa, Nakom, clonazepam, epsilon 25 mg, Comenter 1/4, dextrometorphan, wellbutrin, diovan, lipitor, venlafaxine

Midodrin. Gabapentin,

Lisinopril, HCTZ, omeprazole, ibuprofen, Vit D,

Promethazine. Midodrine thyroid meds cymbalta and norvasc at bedtime for the supine hypertension

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:

Vitamin d, multivitamins probiotic , omegas

Aspirin 81mg, and vitamin C, D, before. Vitamin B complex after.

80 mg Asprin

Betmiga

Vitamins, and coQ 10,

Magnesium glycinate

Vitamin

Asprin, vitamin e

Liquid magnesium; Omega 3fish oil, co enzyme q10, methyl aide,acetyl glutathione

Ibuprofen

Cbd oil, glutathione, multi vitamins

Tylenol

Claritin D/flonase

Aspirin laxative vitamin D-3 multivitamins folicacid

Zyrtec

Miramax, sarna

probencin

Tylenol Ibuprofen Baby Aspirin Multivitamin

Allegra D

Ibuprofen

ibuprofen

Vit B1, C, Potassium, 81mg aspirin

ASA, vitamin c, Claritan, nasocort, Cranberry, SYSTANE eye drops, miralax

Laxatives

tylenol xstrength

Excedrin, benadryl

Tylenol Extra strength

multiple supplements including CoQ10

Paracetamol, lactulose, fibrogel

Pain meds, constipation meds, magnesium tablets, sleeping aids

Omeprazole, ibuprofen, Zyrtec

Aleve

Just vitamins

Neurological Care:

On average, what is/was the frequency of the individual's neurological care?

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

If 'Other" - please state:

We see neuro every 8-12 weeks for MSTAR clinical study visits

Spinal fluid test

Gynecologist Urologist

Medication management; community support services

spinal tap

No care - had cognitive test pre diagnosis.

Neuro psychiatrist

Botox shots for pain and drooling

Has/Had the individual participated in clinical research regarding MSA?

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?

Slow down progression

Test a drug to see if it slows progression

To donate my brain

No

To slow progression

Slow progression

Impact of the bowel

Slow the symptoms

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

Study still going

Study currently underway

I was accepted as a brain donator

Currently enrolled no results yet

Still ongoing

IDK

No change

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:

Tree limb fell on head walking in woods; owned auto repair station and always handling auto chemicals and washing auto parts in gas; and garden pesticides always being used by gardener around area where water well existed even after asking not to.

2 car accidents

Cervical Laminectomy, C3-C7 , multiple concussions

Headaches all my lif

2x car accidents air bags deployed and fall Hit back of head on concrete

Had neck injury years prior in car accident.

Wacked really hard by 6 x 6 beam of wood into my right ear. Ended up with rib pain

cervical tumor ependymoma resection / drainage of syrnix

head aches were assoxiated with chronic sinusitis

Vehicle accident and a fall from a ladder resulting in head trauma and a drug addiction of a chlld for past-15 years

High school football. Spine surgery , 

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:

Notice after year 1 he started progressing faster

the simptoms incrise

Jan 2018 we bought cane to aid with unsteadiness. Mostly that was problem we dealt with. March 2019 he walks very little due to severe dizziness, inability to control legs well enough, leg fatigue, and can’t regulate low blood pressure to avoid falls. Uses scooter. PT didn’t want to continue due to low bp. He now has phlegm at night. He chokes when swallowing if not careful. Constipation worse. Insomnia. Compression socks, salt tabs and fludracortisone just to try and raise bp. Slurring speech. More bad days than good.

Swallowing Choking UTI’s balance. Wheelchair dependent.

June 2019 we moved to new house, he drove and carried boxes, loaded truck, no falls. January 2020 on disability and using walker, not driving, cannot carry anything and walk at same time, had at least 6 falls.

Very poor breathing. Loss of speech ability.

More progress in the last year. Speeding up

Passed away in 2003.

Using a walker now Speech slow and. slurred Want to fall asleep at any time

It has sped up over the last year

Within a year he went from having poor balance to needing a motorized chair to get around. He had to start using diapers because he could not tell most of the time when he had the need to use the bathroom. His voice level became very low and had to start using thickeners to prevent aspiration pneumonia from recurring.

Died 9 months after diagnosis

Balance is worse. More falls. Drooling from excess saliva. Some difficulty eating. Coughs a lot. Needs a lot of prompts when walking.

Went from using rollator to wheelchair basically overnight. Legs extremely weak.

Walk, speech, handwriting, urinary frequency

Last year I participated in Irish Dancing competition, now I rarely walk unaided by either a cane or my husband's arm.

He has become bedridden. Cannot tolerate transfers even to recliner or w/c. No muscle control. Cannot speak at all. Contracted hands. Can eat and swallow finely chopped /puréed food, but must be fed. Good cognition still.

had a supra-pubic catheter fitted. Had light anesthetic (general)

was plateau level for about a year- was doing PT/OT/Speech therapy 3x/week- then started with swallowing/speech difficulties/excessive secretions/coughing

He went from using walker, to unable to stand, to using Hoyer lift. Regular diet to soft foods. Decline in speech. Unable to feed himself. Last 5 week's of life, did not try to get out of bed due excessive sleepiness

Speed of deterioration lead to the changed diagnosis from PD to MSAp

Major decline in the last year

Balance has deteriorated

only diagnosed by neurologist a month ago. Significant regression in last year.

Very rapid progression of symptoms. Died 6 weeks after diagnosis as gave up and stopped eating.

she fell 6 months ago and her condition has been getting worse

Walking deteriorating, balance and falling issues, choking issues, deteriorating vision, extreme fatigue, cognition problems, pneumonia 4 times this year, worsening blood pressure issues

Diagnosis in April, 2020, now walks with assist of one with walker . Wheelchair for outings. Trached, on vent at night, urinary catheter in place, assist with bath and shower. Swollen feet and legs plus 3 pitting edema, cold hands and feet. Does not sweat. Irregular breathing pattern

Living Conditions:

Does/Did the individual receive adequate support to live comfortably?

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

Transition Issues :

If the individual was lost to MSA, how long after MSA diagnosis did he/she live?

If the individual was lost to MSA, please indicate the cause of death:

If 'other', please state:

Sepsis possibly from constipation or uti.

If the individual was lost to MSA, what was his/her age at the time of death?

Has/Had the individual made arrangements to donate his/her brain to an agency for research?

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

Does/Did the individual with MSA support a "patient's right to die?"

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:

The neurologist gave me directions to search MSA-C and I was able to get a lot of information from the coalition. Dad benefited of in home physical, speech and occupational therapist several times a week which encouraged him to work harder on his daily symptoms.he also had a nurse that would communicate with his doctors at any sign of trouble.

I am on hospice and my 90 year mother who is in good health is my caregiver but she needs help and I feel guilty. After she is gone I still want to stay home what then. Also why should I have to pay for this book from Amazon. I'm already having to educate Drs nurses hospice etc.why can't this be available to me

My dad's neurologist he has now doesn't make any suggestions on things to try and help with the symptoms. We will be looking at changing to one who speacialises in MSA. He is slowly progressing and if he hasn't walked or talked for a while he tends to struggle.

I don’t wish this to anyone. 🙏

REM sleep disorder is very poorly understood by medical people. It should ring alarm bells that something is wrong neurologically, but it doesn't. It is important that this seemingly benign symptom gets more attention in medical education.

I would encourage patients, caregivers and families to take a deep breath and live one step/day/phase at a time. My husband wanted so badly to participate in a clinical trial. He was seen several times at Mayo, Rochester, MN, but he was not selected for a trial and now disease progression is too great. I would enjoy others to look into trials early on. Thank you for collecting this information.

7 months prior to death, neurologist/movement specialist suggested hospice care. Fortunately, my husband was capable of making that decision, and others, till day of death. He chose hospice.

We need more support for people and caregivers. This is a horrible disease.

husband and i are both from Europe where right to die is much more advanced than in north America. For us it is part of living. It appears a very hot political issue in N.A.

Had a musky odour. Woeful lack of support from his medical team. Medical team lacked awareness of MSA hence being diagnosed so late into the disease process. Lack of information, support and care for the family. Lack of equipment to make life easier ie no hospital bed downstairs so spent last year+ sleeping on a sofa as couldn't get upstairs. Had to buy his own wheelchair. Post death, the family held a meeting with the medical team (at the family's insistence ) regarding the poor level of care provided. Following the meeting the family instigated education and individual support workers, for MSA and neurological patients/family, post diagnosis.

I believe it’s important to know some symptoms start way earlier and most doctors are unable to connect the dots until years later resulting in frustration for patients and caregivers to the point where seeing yet another doctor is just too much to handle

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

Any thing that will help people with MSA will be good

I hope ti know why its happened

I am to be contacted by anyone for more information

Thanks!

I am having trouble getting the med Northera and my NOH is getting really bad it swings between220/110 when trying to sleep and 58/38 when I stand up to walk it is obviously when I fall the most so in the recent weeks I have had to use my motorized wheelchair. I have had the chair for a long time but could make it with a Walker if necessary. Thank you