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: Multiple Head Injury Factors

Pre/Post Diagnosis

Number of Participants to Date: 40

Participants' responses are unabridged, unedited.

The material presented may be reproduced for the purposes

of education and research with appropriate citation to dataMSA .

Section I: Let's begin -

Has/had the individual received a diagnoses of multiple system atrophy?

yes	37	92.5%
no, not formally	1	2.5%
currently undergoing diagnosis	2	5%

Did the individual experience one or more head injuries either PRIOR to or AFTER diagnosis of multiple system atrophy?

yes	39	97.5%
no	1	2.5%

If the individual did NOT experience one or more head injuries, please exit the survey at this point. Thank you.

Diagnosis Information

What is/was the individual's gender?

male	29	72.5%
female	11	27.5%

With which type of MSA was the individual diagnosed?

MSAc	15	37.5%
MSAp	10	25%
uncertain	15	37.5%

Was the individual diagnosed with a neurological disease PRIOR to receiving a diagnosis of MSA?

Amyotrophic lateral sclerosis (ALS)	0	0%
Epilepsy	1	5%
Essential tremor	1	5%
Huntington's disease	0	0%
Lewy body dementia (LBD)	0	0%
Lyme disease	1	5%
Multiple sclerosis (MS)	0	0%
Parkinson's disease	12	60%
Other	8	40%

If 'Other', please provide the diagnosis assigned PRIOR to MSA diagnosis.

Possible stroke

Diagnosed with cerebellar ataxia

I have over 30+ diagnosis from strangulation but my neurologist is sending me for testing for MSA because my dysautonomia is different than others and isn't genetic. Please email me for complete list of diagnoses.

Peripheral neuropathy

Cerebellar atrophy, with suggestion (insulting and incorrect) that alcohol could be involved.

Possible stroke

Autonomic dysfunction, pots, cerebellar ataxia

Cellebellar ataxia and mini stroke

Pots, cerebellar ataxia

CIDP

If the individual was diagnosed with a neurological disease PRIOR to receiving a diagnosis of MSA, was the earlier diagnosis corrected/reversed after MSA diagnosis?

yes	14	53.8%
no	12	46.2%

You may explain here:

Data can showed it wasn’t Parkinson’s

As is common, diagnosed with PD first, and then when PD drugs were less than effective, further investigation resulted in MSA diagnosis.

With msa I still have cerebellar ataxia

In process, neurologist believes all prior diagnoses are actually msa.

It was considered my husband had both.

They found symptoms and brain scan then referred to NIH

Rediagnosed as MSA after more testing at Mayo

I won't have an official diagnosis until August 2019, hopefully. It stands as a probable diagnosis for now.

Thought Parkinson's til we saw neuro

Neueologist told me thats all part of msa-c

I was treated forAddisons disease

Balance kept getting worse more falls and speech more slurred

Reversed from PD to MSA.

I was told that was all part of msa.

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

1	6	15%
2	15	37.5%
3	9	22.5%
4	6	15%
5 or more	4	10%
Was not seen by a neurologist	0	0%
Was diagnosed through other means (please explain below)	0	0%

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

Currently awaiting being sent to autonomic testing laboratory.

Were the individual's experiences with head injury(ies) discussed/explored by neurologist(s)/specialist(s) during the MSA diagnosis processes?

yes	14	35.9%
no	25	64.1%

If the individual's experiences with head injury(ies) were discussed/explored by neurologist(s)/specialist(s) during the MSA diagnosis processes, please describe what was discussed.

Patient suffered subdural hematoma 6 weeks after 2nd heart attack. Hematoma was a result of triple therapy being rxed after heart attack

they were considered not to contribute to my condition

it was not deemed revevant to MSA

They were discussed and dismissed as irrelevant. Major skull fracture is his early 20s. Died Sunday at 50 4 years after symptoms

We told the doctor about her car accident and resulting head injury and broken neck and the doctor told us MSA was not the result of her accident.

I've had four concussions in my life. Two major and two minor. The first major I was only 15 years old. These head injuries did raise the eyebrows of two Neurologists.

Falling from low blood pressure

I informed the neurologist of several times when I whacked my head really hard. We spoke of it briefly but said it was not a determining factor in making the diagnosis.

Type of head injuries, when they occured and how they occured and symptoms following them

normal head injuries from football in highscool

How injury was received and when

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

20-25	1	2.5%
26-30	0	0%
31-35	0	0%
36-40	2	5%
41-45	4	10%
46-50	4	10%
51-55	12	30%
56-60	7	17.5%
61-65	9	22.5%
66-70	1	2.5%
71-75	0	0%
76-80	0	0%
80 or older	0	0%

At what age did the individual receive a diagnosis of MSA?

20-25	0	0%
26-30	0	0%
31-35	0	0%
36-40	0	0%
41-45	1	2.6%
46-50	2	5.1%
51-55	12	30.8%
56-60	5	12.8%
61-65	14	35.9%
66-70	2	5.1%
71-75	3	7.7%
76-80	0	0%
80 or older	0	0%

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

Neuropathy (numbness, tingling in extremities)	13	32.5%
Excessive Neuro-Response (jumpy reflexes)	5	12.5%
Difficulty Walking	19	47.5%
Impaired Balance	35	87.5%
Fainting/Falling	15	37.5%
Unstable Blood Pressure	17	42.5%
Dystonia (muscle spasms/ rigidity)	9	22.5%
Neuro-Motor Freeze (temporarily unable to move at all)	7	17.5%
Myalgia (muscle pain)	8	20%
Tremors	14	35%
Impaired Motor Skills	14	35%
Impaired Vision	7	17.5%
Hearing Loss	4	10%
Trouble with Sense of Smell	6	15%
Impaired Speech	14	35%
Difficulty Swallowing/Choking	10	25%
Difficulty Breathing	3	7.5%
Impaired Bowel/Bladder Control	12	30%
Impotence	15	37.5%
Chronic Fatigue	9	22.5%
Insomnia	5	12.5%
Impaired REM Sleep Cycle	10	25%
Speech,Language, Cognitive-Communication Deficits	7	17.5%
Impaired Memory - Short, Intermediate, Long Term	7	17.5%
Chronic Headaches	6	15%
Episodes of Confusion	8	20%
Difficulty Planning and Carrying Out Tasks	10	25%
Depression	9	22.5%
Anxiety	10	25%
Impulsivity	3	7.5%
Overreaction to Minor Stressors	9	22.5%
Episodes of Anger/Rage/Combativeness	6	15%
Suicidal Ideation/Thoughts	5	12.5%
Attempt(s) at Suicide	1	2.5%
Other	1	2.5%

If 'other', please describe.

Heart rate between 30-300 with no reason for it that could be explained

Inappropriate laughter

Directional impairment, eg direction of travel, when previously his sense of direction was very good

Did not seek MSA diagnosis, just answers. No one had ever heard of MSA before the NIH made diagnosis

Depth perception issues noticed when driving.

Did not seek treatment for severe REM, thought it was just him.

Section II

Information Related to Head Injury(ies) Experienced PRIOR to MSA Diagnosis

How many head injuries did the individual experience PRIOR to receiving MSA diagnosis?

1	17	43.6%
2	8	20.5%
3	2	5.1%
4	5	12.8%
5	4	10.3%
6	0	0%
7	0	0%
8	1	2.6%
9	0	0%
10+	2	5.1%

What was/were the cause(s) of the(se) head injury(ies)?

Contact sports (football, soccer, boxing, etc.)	8	22.9%
Outdoor recreational activities (other than contact sports)	9	25.7%
Automobile accidents	17	48.6%
Slips and falls	14	40%
Work-realted accidents (other than slips and falls)	3	8.6%
Physical assault or abuse	4	11.4%
Other	2	5.7%

If other, please describe

Non fatal strangulation

child abuse from age8-15

Falls happened because of accidental falling after disease symptoms existed

As a child fell off play equipment and hit his head. Then as an adult fell off a ladder and suffered concussion.

Working in a flower bed and when she stood up she fell over backwards and hit the back of her head hard on the ground.

Due to blood pressure instability and wrong medication to correct it she blacked out approx 8 times in one morning, every time she stood up her blood pressure dropped resulting in her collapsing. 2 times were very significant; 1) she fell and hit face first of the edge of washing machine. She fell on the bridge of her nose. This resulted in permentant loss of smell. 2) She collapsed on toilet. She was unconscious with eyes rolling back and unresponsive for a number of minutes. Looked at bit like have a stroke.

Please add any information relevant to cause(s) of head injury(ies) the individual experienced PRIOR to MSA diagnosis.

child abuse

Severe 'whiplash' type injury

Hit head while playing basketball

I had a bicycle accident that knocked me out

see above

Bicycle wreck, head hit rock

He was a physical risk-taker.

Hit over the head with a rock during a car jacking incident. Required staples to close wound.

About three or four years ago (I don’t remember exactly when it occurred), I was stoned and shuffling toward the side (a solid fire) door, I took a header into the door because I couldn’t get my hands out in front of me in time) and solidly whacked the side door. It dropped me to the floor, where I sat dazed and confused for about five-to-10;minutes before getting to my feet. I started moving again and repeated the head whacking on the door when I fell again. THIS time, I fell to my knees and bent over holding my head as 1,000,000 needles of sharp pain radiated in a 360 degrees arc around mt head until I passed out. I awoke about two hours later. I arose and went to bed without seeking medical help.

Was in drug induced coma after auto accident

symptoms were noticed after back surgery (fusion & lamondectomy) at age 51.

At what age did head injury #1 occur, PRIOR to MSA diagnosis?

Less than 5 years old	1	2.6%
6-10 years old	6	15.4%
11-14 years old	3	7.7%
15-20 years old	7	17.9%
21-24 years old	7	17.9%
25-30 years old	5	12.8%
31-34 years old	2	5.1%
35-40 years old	1	2.6%
41-44 years old	2	5.1%
45-50 years old	7	17.9%
older than 50 years old	9	23.1%
Other	1	2.6%

For head injury #1, what symptoms did the individual experience?

Not Certain/Unknown	8	21.1%
Fracture to the skull.	7	18.4%
Convulsions or seizures.	3	7.9%
Diagnosed concussion	12	31.6%
No loss of consciousness	4	10.5%
Brief loss of consciousness lasting less than 15 minutes	13	34.2%
Loss of consciousness lasting between 60 minutes and 20 hours	4	10.5%
Loss of consciousness lasting 20 hours or more	1	2.6%
Persistent headache	8	21.1%
Difficult to awaken from sleep.	1	2.6%
Impaired balance	6	15.8%
Impaired hearing, smell, taste, or vision.	3	7.9%
Fluids draining from the nose or ears.	1	2.6%
Dilation of one or both pupils of the eyes.	3	7.9%
Repeated vomiting or nausea.	2	5.3%
Impaired speech	1	2.6%
Difficulty with memory/concentration	5	13.2%
Difficulty controlling emotions/emotional outbursts	2	5.3%
Depression	2	5.3%
Mood swings	3	7.9%
Other	9	23.7%

If 'Other', please describe.

One side of face drooped for quite some time after.

He fell and cut his head open. Ended up with big lump.

For head injury #1, what assessments were used to diagnose the severity?

Not Certain/Unknown	11	29.7%
Physician Consultation/Observation	21	56.8%
Neurological Assessment	4	10.8%
Cognition/Neuropsychological Assessment	0	0%
Speech/Language Assessment(s)	0	0%
Vision Assessment	1	2.7%
Auditory Assessment	0	0%
MRI	3	8.1%
CT scan	8	21.6%
daTscan	0	0%
Traumatic Brain Injury (Adults) Evidence Map	0	0%
Glasgow Coma Scale (GCS)	1	2.7%
Intracranial Pressure (ICP)	0	0%
Hospital visit	7	18.9%
Hospitalization 1 day	2	5.4%
Hospitalization 2-3 days	2	5.4%
Hospitalization 4 or more days	6	16.2%
Other	2	5.4%

If 'Other', please describe.

overnight hospital

Physiotherapy was given for approx. 3 weeks

none

Broken neck required surgery and halo harness be worn for several months. Screw holes drilled into skull.

At what age did head injury #2 occur, PRIOR to MSA diagnosis?

Less than 5 years old	1	4.5%
6-10 years old	2	9.1%
11-14 years old	2	9.1%
15-20 years old	2	9.1%
21-24 years old	2	9.1%
25-30 years old	3	13.6%
31-34 years old	0	0%
35-40 years old	1	4.5%
41-44 years old	1	4.5%
45-50 years old	3	13.6%
older than 50 years old	5	22.7%
Other	0	0%

For head injury #2, what symptoms did the individual experience?

Not Certain/Unknown	2	9.1%
Fracture to the skull.	1	4.5%
Convulsions or seizures.	2	9.1%
Diagnosed concussion	3	13.6%
No loss of consciousness	3	13.6%
Brief loss of consciousness lasting less than 15 minutes	7	31.8%
Loss of consciousness lasting between 60 minutes and 20 hours	1	4.5%
Loss of consciousness lasting 20 hours or more	1	4.5%
Persistent headache	8	36.4%
Difficult to awaken from sleep.	5	22.7%
Impaired balance	5	22.7%
Impaired hearing, smell, taste, or vision.	2	9.1%
Fluids draining from the nose or ears.	0	0%
Dilation of one or both pupils of the eyes.	1	4.5%
Repeated vomiting or nausea.	2	9.1%
Impaired speech	2	9.1%
Difficulty with memory/concentration	7	31.8%
Difficulty controlling emotions/emotional outbursts	4	18.2%
Depression	2	9.1%
Mood swings	4	18.2%
Other	5	22.7%

If 'Other', please describe.

Numerous times he would fall, cut his head open, and off to the hospital we would go. It happened so often that it is hard for me to remember which fall came at which time.

Was in drug induced coma for i think at least 2 days

For head injury #2, what assessments were used to diagnose the severity?

Not Certain/Unknown	5	23.8%
Physician Consultation/Observation	12	57.1%
Neurological Assessment	5	23.8%
Cognition/Neuropsychological Assessment	2	9.5%
Speech/Language Assessment(s)	0	0%
Vision Assessment	1	4.8%
Auditory Assessment	0	0%
MRI	4	19%
CT scan	8	38.1%
daTscan	0	0%
Traumatic Brain Injury (Adults) Evidence Map	1	4.8%
Glasgow Coma Scale (GCS)	0	0%
Intracranial Pressure (ICP)	1	4.8%
Hospital visit	3	14.3%
Hospitalization 1 day	1	4.8%
Hospitalization 2-3 days	0	0%
Hospitalization 4 or more days	3	14.3%
Other	2	9.5%

If 'Other', please describe.

Self reporting

I used to joke that Steve had so many CATscans that he would glow in the dark.

None of the above.

At what age did head injury #3 occur, PRIOR to MSA diagnosis?

Less than 5 years old	1	7.1%
6-10 years old	1	7.1%
11-14 years old	2	14.3%
15-20 years old	0	0%
21-24 years old	1	7.1%
25-30 years old	0	0%
31-34 years old	1	7.1%
35-40 years old	0	0%
41-44 years old	1	7.1%
45-50 years old	2	14.3%
older than 50 years old	5	35.7%
Other	0	0%

For head injury #3, what symptoms did the individual experience?

Not Certain/Unknown	0	0%
Fracture to the skull.	3	20%
Convulsions or seizures.	1	6.7%
Diagnosed concussion	1	6.7%
No loss of consciousness	4	26.7%
Brief loss of consciousness lasting less than 15 minutes	4	26.7%
Loss of consciousness lasting between 60 minutes and 20 hours	1	6.7%
Loss of consciousness lasting 20 hours or more	0	0%
Persistent headache	6	40%
Difficult to awaken from sleep.	2	13.3%
Impaired balance	5	33.3%
Impaired hearing, smell, taste, or vision.	3	20%
Fluids draining from the nose or ears.	0	0%
Dilation of one or both pupils of the eyes.	3	20%
Repeated vomiting or nausea.	2	13.3%
Impaired speech	2	13.3%
Difficulty with memory/concentration	4	26.7%
Difficulty controlling emotions/emotional outbursts	4	26.7%
Depression	2	13.3%
Mood swings	2	13.3%
Other	5	33.3%

If 'Other', please describe.

hospital stay overnight

He fell and hit his head, almost in the exact same place numerous times. First while biking, then just falling. One day my next door neighbor knocked on my door and told me he was on the ground on the sidewalk across the street. Once he cut his head in the house so badly that it was spurring blood across the room. All this happened about the time of diagnosis, and it continued to happen after the diagnosis. Once he fell and hit his face and head on the kitchen floor. All those times were prior to diagnosis.

For head injury #3, what assessments were used to diagnose the severity?

Not Certain/Unknown	4	30.8%
Physician Consultation/Observation	10	76.9%
Neurological Assessment	2	15.4%
Cognition/Neuropsychological Assessment	1	7.7%
Speech/Language Assessment(s)	1	7.7%
Vision Assessment	1	7.7%
Auditory Assessment	1	7.7%
MRI	3	23.1%
CT scan	4	30.8%
daTscan	0	0%
Traumatic Brain Injury (Adults) Evidence Map	1	7.7%
Glasgow Coma Scale (GCS)	0	0%
Intracranial Pressure (ICP)	0	0%
Hospital visit	2	15.4%
Hospitalization 1 day	1	7.7%
Hospitalization 2-3 days	0	0%
Hospitalization 4 or more days	1	7.7%
Other	2	15.4%

If 'Other', please describe.

Self reporting

None, as I didn’t go to the ER.

At what age did head injury #4 occur, PRIOR to MSA diagnosis?

Less than 5 years old	1	8.3%
6-10 years old	0	0%
11-14 years old	2	16.7%
15-20 years old	0	0%
21-24 years old	0	0%
25-30 years old	1	8.3%
31-34 years old	0	0%
35-40 years old	1	8.3%
41-44 years old	2	16.7%
45-50 years old	0	0%
older than 50 years old	4	33.3%
Other	1	8.3%

For head injury #4, what symptoms did the individual experience?

please describe.

See above.

For head injury #4, what assessments were used to diagnose the severity?

Not Certain/Unknown	1	10%
Physician Consultation/Observation	7	70%
Neurological Assessment	3	30%
Cognition/Neuropsychological Assessment	0	0%
Speech/Language Assessment(s)	0	0%
Vision Assessment	0	0%
Auditory Assessment	0	0%
MRI	3	30%
CT scan	5	50%
daTscan	0	0%
Traumatic Brain Injury (Adults) Evidence Map	0	0%
Glasgow Coma Scale (GCS)	0	0%
Intracranial Pressure (ICP)	0	0%
Hospital visit	2	20%
Hospitalization 1 day	1	10%
Hospitalization 2-3 days	0	0%
Hospitalization 4 or more days	1	10%
Other	2	20%

If 'Other', please describe.

no hospital visit

None as I didn’t think it warranted a Tripp to the ER.

Husband checked on me every few hours. Alert when awoken. Had headache and nausea for a couple of days. 3 of the four head injuries were to the back of the head.

At what age did head injury #5 occur, PRIOR to MSA diagnosis?

Less than 5 years old	0	0%
6-10 years old	0	0%
11-14 years old	1	12.5%
15-20 years old	1	12.5%
21-24 years old	0	0%
25-30 years old	0	0%
31-34 years old	0	0%
35-40 years old	0	0%
41-44 years old	2	25%
45-50 years old	0	0%
older than 50 years old	3	37.5%
Other	1	12.5%

For head injury #5, what symptoms did the individual experience?

Not Certain/Unknown	1	14.3%
Fracture to the skull.	1	14.3%
Convulsions or seizures.	0	0%
Diagnosed concussion	0	0%
No loss of consciousness	0	0%
Brief loss of conciousness lasting less than 15 minutes	4	57.1%
Loss of consciousness lasting between 60 minutes and 20 hours	0	0%
Loss of consciousness lasting 20 hours or more	0	0%
Persistent headache	1	14.3%
Difficult to awaken from sleep.	0	0%
Impaired balance	3	42.9%
Impaired hearing, smell, taste, or vision.	0	0%
Fluids draining from the nose or ears.	0	0%
Dilation of one or both pupils of the eyes.	1	14.3%
Repeated vomiting or nausea.	0	0%
Impaired speech	0	0%
Difficulty with memory/concentration	2	28.6%
Difficulty controlling emotions/emotional outbursts	0	0%
Depression	0	0%
Mood swings	0	0%
Other	2	28.6%

If 'Other', please describe.

No responses yet for this question.

For head injury #5, what assessments were used to diagnose the severity of any/all head injury(ies) suffered by the individual prior to MSA diagnosis?

Not Certain/Unknown	1	14.3%
Physician Consultation/Observation	5	71.4%
Neurological Assessment	1	14.3%
Cognition/Neuropsychological Assessment	2	28.6%
Speech/Language Assessment(s)	1	14.3%
Vision Assessment	0	0%
Auditory Assessment	0	0%
MRI	3	42.9%
CT scan	3	42.9%
daTscan	0	0%
Traumatic Brain Injury (Adults) Evidence Map	1	14.3%
Glasgow Coma Scale (GCS)	0	0%
Intracranial Pressure (ICP)	0	0%
Hopsital visit	1	14.3%
Hospitalization 1 day	0	0%
Hospitalization 2-3 days	0	0%
Hospitalization 4 or more days	1	14.3%
Other	0	0%

If 'Other', please describe.

hospital overnight

If the individual experienced more than 5 head injuries, please list each in order of the age they occured and briefly describe.

From age 7-15, resulting in head trauma - child abuse (lost count) Age 20, car accident - concsussion, hopsitalization Age 20-within 10 days of prior injury, fall 15 feet, concussion, lost of conciousness, 3 day hospital stay, mood change, anger age 48, carr accident, maybe concussion? no hospital visit

#6 age 20, fall into empty pool, concussion, mood disorder #7 age 48, car accident many others due to child abuse

Did the individual experience two or more head injuries within the span of one month?

yes	5	20%
no	20	80%

If the individual experienced two or more head injuries within the span of one month, please identify those head injuries using the number(s) you cited above.

please see prior answer at age 20

#5 and #6, within 10 days

4-5

#1&#2

If the individual experienced two or more head injuries within the span of one month, please identify any extreme or life-threatening symptoms.

At age 20, Drs were concerned about brain swelling

hospitalized for 2 days, drs. worried about brain swelling

None

Additional Information Related to Head Injury(ies) Experienced PRIOR to MSA Diagnosis

Has/Had the individual REGULARLY taken prescription or over-the-counter medication for symptoms related to head injury(ies) suffered PRIOR to diagnosis of MSA?

yes	7	19.4%
no	29	80.6%

If yes, please list the medication(s) taken regularly by the individual for symptoms related to head injury(ies) suffered PRIOR to MSA diagnosis.

Plavix, ASA, pradaxa

Dantrolene Gabapentin Xanax Aimovig

Unknown

Ibuprofen and Tylenol

Dilantin

Ibuprofen and not sure of others because head injuries were awhile ago

Ibuprofen, and others prescription meds. i don't remember

With regard to other possible MSA-contributing factors - NOT RELATED TO HEAD INJURY(IES) - which of the following did the individual experience PRIOR to receiving a diagnosis of MSA?

Prior history of chronic headaches	8	22.2%
Prior neck injury	8	22.2%
Prior back injury	8	22.2%
Prior exposure to chemicals/toxins	9	25%
Prior exposure to high levels of stress	16	44.4%
Prior diagnosis of Post Traumatic Stress Disorder	3	8.3%
Prior diagnosis of Seizure Disorder	2	5.6%
Family history of Alzheimer's Disease	4	11.1%
Family history of Parkinson's Disease	3	8.3%
Family history of Multiple Sclerosis	0	0%
None of the above	6	16.7%
Other	5	13.9%

If 'Other', please describe.

Worked in the nuclear industry

Family history of something they thought was MS. Paternal Grandmother

Drs. say i had a stroke in 2017 but are not sure what caused it

Possibly chemical exposure: pesticides

Please share any additional information relevant to the individual's experience(s) with head injury(ies) PRIOR to MSA diagnosis.

I have lost count of the number of head traumas...at least 10

The back of the neck had a kink in it

suffered many years of extreme child abuse

We feel his balance may have been off many years prior to onset. Very clumsy, always spilled drinks when walking etc. His loss of balance when drinking even small amount led to the impression he was very drunk, balance and speech very much altered by even one drink.

There was a lot of inflammation in his CSF.

Ringing in the ears.

Ever since my 2nd head injury have always had problems with headaches and occasional speech problems

Was in drug induced coma after mva

MSA Research Experiences

Has/Had the individual participated in clinical research related to MSA?

yes	6	15%
no	34	85%

If the individual participated in clinical research related to MSA, was the individual's history of head injury(ies) discussed?

yes	2	14.3%
no	12	85.7%

If prior history of head injury was discussed during MSA research, please provide more information.

not deemed relevant

I’m told it was thoroughly dismissed as not relevant

If prior history of head injury was NOT discussed during MSA research, did you attempt to present the information?.

Question	Count
yes	1
no	8

yes	1	11.1%
no	8	88.9%

If you attemped to mention prior history of head injury during MSA research, please what occured.

No responses yet for this question.

Please share any information about the individual's MSA research experiences that relate to his/her history of head injury(ies).

I mentioned it, but it was deemed not relevant

10+

I've had 2 MRIs of my brain and 1 of my whole spine, a CT/ CA of my cardiac arteries. Bone density scan. A Doppler of my carotid arteries. Many blood tests, 24 hr BP monitoring.

Transition Issues

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


20-25	0
26-30	0
31-35	0
36-40	0
41-45	0
46-50	1
51-55	0
56-60	4
61-65	4
66-70	2
71-75	1
76-80	0
81-85	0
86-90	0
90 or older	0

20-25	0	0%
26-30	0	0%
31-35	0	0%
36-40	0	0%
41-45	0	0%
46-50	1	8.3%
51-55	0	0%
56-60	4	33.3%
61-65	4	33.3%
66-70	2	16.7%
71-75	1	8.3%
76-80	0	0%
81-85	0	0%
86-90	0	0%
90 or older	0	0%

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

Respiratory failure (stopped breathing)	5	45.5%
Respiratory infection (e.g.: pneumonia)	4	36.4%
Respiratory blockage (choking, obstruction)	0	0%
Heart attack	1	9.1%
Stroke	0	0%
Other complications from blood clot(s)	0	0%
Digestive system failure (unable to digest food)	0	0%
Digestive system blockage	0	0%
Head injury due to fall	0	0%
Other injury due to fall	0	0%
Other	1	9.1%

If 'Other", please explain

Progressive weakness caused heart to stop beating and breathing to stop.

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


one year	3
two years	4
three years	1
four years	1
five years	1
six years	0
seven years	0
eight years	2
nine years	0
ten years	0
Other	0

one year	3	25%
two years	4	33.3%
three years	1	8.3%
four years	1	8.3%
five years	1	8.3%
six years	0	0%
seven years	0	0%
eight years	2	16.7%
nine years	0	0%
ten years	0	0%
Other	0	0%

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

yes	6	24%
no	19	76%

If the individual's brain was donated for research, was the history of head injury discussed with the individual's family/loved ones?

yes	1	14.3%
no	6	85.7%

If the results of the individual's brain research were made available to the family/loved ones, please share any information that could be helpful to others.

No responses yet for this question.

Information Related to Head Injury(ies) Experienced AFTER Diagnosis of MSA

Has/Had the individual experienced one or more head injuries AFTER MSA diagnosis?

yes	11	28.9%
no	27	71.1%

Please indicate the number of head injuries the individual experienced AFTER MSA diagnosis?


1	8
2	4
3	0
4	0
5 or more	0

1	8	66.7%
2	4	33.3%
3	0	0%
4	0	0%
5 or more	0	0%

Regading the 1st head injury AFTER MSA diagnosis, please indicate symptoms the individual experienced.

Not Certain/Unknown	2	16.7%
Fracture to the skull.	0	0%
Convulsions or seizures.	1	8.3%
Diagnosed concussion	0	0%
No loss of consciousness	5	41.7%
Brief loss of consciousness lasting less than 15 minutes	0	0%
Loss of consciousness lasting between 60 minutes and 20 hours	0	0%
Loss of consciousness lasting 20 hours or more	0	0%
Persistent headache	3	25%
Difficult to awaken from sleep.	2	16.7%
Impaired balance	5	41.7%
Impaired hearing, smell, taste, or vision.	2	16.7%
Fluids draining from the nose or ears.	0	0%
Dilation of one or both pupils of the eyes.	1	8.3%
Repeated vomiting or nausea.	0	0%
Impaired speech	0	0%
Difficulty with memory/concentration	1	8.3%
Difficulty controlling emotions/emotional outbursts	0	0%
Depression	1	8.3%
Mood swings	0	0%
Other	5	41.7%

If 'Other", please state.

both falls

He fell and hit his head on his dresser.

Regarding the 1st head injuy AFTER MSA diagnosis, what assessments were used to diagnose the severity?

Not Certain/Unknown	2	25%
Physician Consultation/Observation	6	75%
Neurological Assessment	2	25%
Cognition/Neuropsychological Assessment	0	0%
Speech/Language Assessment(s)	0	0%
Vision Assessment	1	12.5%
Auditory Assessment	1	12.5%
MRI	2	25%
CT scan	3	37.5%
daTscan	0	0%
Traumatic Brain Injury (Adults) Evidence Map	0	0%
Glasgow Coma Scale (GCS)	1	12.5%
Intracranial Pressure (ICP)	0	0%
Other	0	0%

If 'Other", please state.

Please see notes above.

Regading the 2nd head injury AFTER MSA diagnosis, please indicate symptoms the individual experienced.

Not Certain/Unknown	0	0%
Fracture to the skull.	0	0%
Convulsions or seizures.	0	0%
Diagnosed concussion	0	0%
No loss of consciousness	0	0%
Brief loss of consciousness lasting less than 15 minutes	0	0%
Loss of consciousness lasting between 60 minutes and 20 hours	0	0%
Loss of consciousness lasting 20 hours or more	0	0%
Persistent headache	0	0%
Difficult to awaken from sleep.	0	0%
Impaired balance	0	0%
Impaired hearing, smell, taste, or vision.	0	0%
Fluids draining from the nose or ears.	0	0%
Dilation of one or both pupils of the eyes.	0	0%
Repeated vomiting or nausea.	0	0%
Impaired speech	0	0%
Difficulty with memory/concentration	0	0%
Difficulty controlling emotions/emotional outbursts	0	0%
Depression	0	0%
Mood swings	0	0%
Other	1	100%

If 'Other", please state.

No responses yet for this question.

Regarding the 2nd head injuy AFTER MSA diagnosis, what assessments were used to diagnose the severity?

Not Certain/Unknown	0	0%
Physician Consultation/Observation	1	50%
Neurological Assessment	0	0%
Cognition/Neuropsychological Assessment	1	50%
Speech/Language Assessment(s)	0	0%
Vision Assessment	1	50%
Auditory Assessment	1	50%
MRI	0	0%
CT scan	1	50%
daTscan	0	0%
Traumatic Brain Injury (Adults) Evidence Map	0	0%
Glasgow Coma Scale (GCS)	0	0%
Intracranial Pressure (ICP)	0	0%
Other	0	0%

If, 'Other', please describe.

No responses yet for this question.

If the individual experienced 3 or more head injuries AFTER MSA diagnosis, please provide relevant details.

No responses yet for this question.

If the individual experienced 3 or more head injuries AFTER MSA diagnosis, please provide relevant details.

No responses yet for this question.

Did any of the individuals symptoms appear to worsen due to head injury(ies) experienced AFTER MSA diagnosis?

yes	3	50%
no	3	50%

Please list symptoms that appeared to worsen and provide a brief description.

not certain

cognition, mood

Loss of balance. Not being able to drive very far, climbing a small ladder, bending too low. My speech has increased slurring , increased urine output often incontinent.

If the individual's MSA symptoms worsened as a result of head injury, approximately how long after the injury did the worsening start?


0-6 months	3
7-12 months	1
13-18 months	0
19-24 months	0
more than 24 months	0

0-6 months	3	75%
7-12 months	1	25%
13-18 months	0	0%
19-24 months	0	0%
more than 24 months	0	0%

Did a head injury suffered by the individual AFTER MSA diagnosis result in his/her death?


yes	0
no	7

yes	0	0%
no	7	100%

If a head injury resulted in the individual's death, how long after the injury did he/she survive?

No responses yet for this question.

If 'Other', please state.

No responses yet for this question.

If a head injury resulted in the individual's death, what symptoms/conditions were present following the injury?

No responses yet for this question.

If 'Other', please describe.

No responses yet for this question.

If a head injury resulted in the individual's death, please indicate cause of death.

No responses yet for this question.

If 'Other', please state.

No responses yet for this question.

If head injury resulted in the individual's death, please provide any information that may be helpful.

No responses yet for this question.

Please add any comments related to head injury(ies) the individual experienced AFTER MSA diagnosis.

one was rather severe....knocked out for an hour+, was alone

While he had the head injuries BEFORE. diagnosis, he had the disease before the injury, just undiagnosed. (Called Parkinsons with Shy Dragor Syndrome)

I was seen by a GP just after hitting my head and required sutures. My observations were taken

Your Comments

Please add comments, observations and experiences related to the individual's head injuries and his/her MSA journey which you feel may be helpful to those who research, educate and raise awareness of MSA:

I have always suspected the head trauma could have contributed to my current condition, although no one seemed to agree with me. However, a new doctor is looking at possible connections

He had a bad cough prior to the fall causing the head injury, this turned out to be aspiration pneumonia, he was not well at the time and it is possible that he was confused getting out of bed in a strange room (we were on holiday), but he doesn't remember what happened, I just heard a loud bang, rushed in to find him unconscious and bleeding from the back of his head.

I think there may bea connection...I tried to mention my head traumas to doctors all through my diagnosis...

Each time he fell, he seemed to go downhill after each head injury, even though there was no noted damage.

Please do not underestimate the issue of choking & shallowing, because it might lead to pneumonia (the food particles might go into the respiratory system which cause this fatal disease)

My husband always thought his head injuries contributed to his MSA. He had the same difficulties as a friend who has progressive TBI. One neurologist said he was leaking. Was the brain leaking into the spinal fluid?

She was given medication to lower her blood pressure but because the problem was instability, not high blood pressure, the medication caused it to drop suddenly when she stood up.

I noticed an uptick of having problems with balance issues last year and it became increasingly worse as time progressed. After Christmas last tear I had a loss of consciousness for a few minutes & in the process, I fell onto a concrete curb I was walking over, breaking ribs t2-t7. After they healed, using my cane, I fell in the garden landing on a large garden gnome, severely bruising the same ribs again. The cane also broke my fall by taking the brunt of the force of the fall (I am 6’5” tall, so you the do the math.

My symptoms are progressing and some new ones are starting to happen.

My biggest concern is my very severe headaches associated with my MSA.

I ended up being hospitalised 4weeks after my head injury because I wasn't recovering fast enough from an hypotensive event.

Please add any comments or suggestions you may have specifically related to this survey.

perhaps add information on hospital stays

Thank you for doing this.

Thank you for creating a space to share this information.

I have also been around burn pits while in Afghanistan, have suffered 3 heart attacks and one TIA.

Thank you sincerely for your participation.

You may view all dataMSA survey results at www.dataMSA.com -

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

data﻿MSA©﻿﻿﻿﻿

Global Data Collection for Multiple System Atrophy

dataMSA Survey: Multiple Head Injury Factors

Pre/Post Diagnosis﻿

Participants' responses are unabridged, unedited.

Section I: Let's begin -

Did the individual experience one or more head injuries either PRIOR to or AFTER diagnosis of multiple system atrophy?

If the individual did NOT experience one or more head injuries, please exit the survey at this point. Thank you.

Diagnosis Information

What is/was the individual's gender?

With which type of MSA was the individual diagnosed?

Was the individual diagnosed with a neurological disease PRIOR to receiving a diagnosis of MSA?

If 'Other', please provide the diagnosis assigned PRIOR to MSA diagnosis.

If the individual was diagnosed with a neurological disease PRIOR to receiving a diagnosis of MSA, was the earlier diagnosis corrected/reversed after MSA diagnosis?

You may explain here:

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

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

Were the individual's experiences with head injury(ies) discussed/explored by neurologist(s)/specialist(s) during the MSA diagnosis processes?

If the individual's experiences with head injury(ies) were discussed/explored by neurologist(s)/specialist(s) during the MSA diagnosis processes, please describe what was discussed.

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

At what age did the individual receive a diagnosis of MSA?

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

If 'other', please describe.

Section II

Information Related to Head Injury(ies) Experienced PRIOR to MSA Diagnosis

How many head injuries did the individual experience PRIOR to receiving MSA diagnosis?

What was/were the cause(s) of the(se) head injury(ies)?

If other, please describe

Please add any information relevant to cause(s) of head injury(ies) the individual experienced PRIOR to MSA diagnosis.

At what age did head injury #1 occur, PRIOR to MSA diagnosis?

For head injury #1, what symptoms did the individual experience?

If 'Other', please describe.

For head injury #1, what assessments were used to diagnose the severity?

If 'Other', please describe.

At what age did head injury #2 occur, PRIOR to MSA diagnosis?

For head injury #2, what symptoms did the individual experience?

If 'Other', please describe.

For head injury #2, what assessments were used to diagnose the severity?

If 'Other', please describe.

At what age did head injury #3 occur, PRIOR to MSA diagnosis?

For head injury #3, what symptoms did the individual experience?

If 'Other', please describe.

For head injury #3, what assessments were used to diagnose the severity?

If 'Other', please describe.

At what age did head injury #4 occur, PRIOR to MSA diagnosis?

For head injury #4, what symptoms did the individual experience?

For head injury #4, what assessments were used to diagnose the severity?

If 'Other', please describe.

At what age did head injury #5 occur, PRIOR to MSA diagnosis?

For head injury #5, what symptoms did the individual experience?

If 'Other', please describe.

For head injury #5, what assessments were used to diagnose the severity of any/all head injury(ies) suffered by the individual prior to MSA diagnosis?

If 'Other', please describe.

If the individual experienced more than 5 head injuries, please list each in order of the age they occured and briefly describe.

Did the individual experience two or more head injuries within the span of one month?

If the individual experienced two or more head injuries within the span of one month, please identify those head injuries using the number(s) you cited above.

If the individual experienced two or more head injuries within the span of one month, please identify any extreme or life-threatening symptoms.

Additional Information Related to Head Injury(ies) Experienced PRIOR to MSA Diagnosis

Has/Had the individual REGULARLY taken prescription or over-the-counter medication for symptoms related to head injury(ies) suffered PRIOR to diagnosis of MSA?

If yes, please list the medication(s) taken regularly by the individual for symptoms related to head injury(ies) suffered PRIOR to MSA diagnosis.

With regard to other possible MSA-contributing factors - NOT RELATED TO HEAD INJURY(IES) - which of the following did the individual experience PRIOR to receiving a diagnosis of MSA?

If 'Other', please describe.

Please share any additional information relevant to the individual's experience(s) with head injury(ies) PRIOR to MSA diagnosis.

MSA Research Experiences

Has/Had the individual participated in clinical research related to MSA?

If the individual participated in clinical research related to MSA, was the individual's history of head injury(ies) discussed?

If prior history of head injury was discussed during MSA research, please provide more information.

If prior history of head injury was NOT discussed during MSA research, did you attempt to present the information?.

If you attemped to mention prior history of head injury during MSA research, please what occured.

Please share any information about the individual's MSA research experiences that relate to his/her history of head injury(ies).

Transition Issues

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

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

If 'Other", please explain

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

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

If the individual's brain was donated for research, was the history of head injury discussed with the individual's family/loved ones?

If the results of the individual's brain research were made available to the family/loved ones, please share any information that could be helpful to others.

Information Related to Head Injury(ies) Experienced AFTER Diagnosis of MSA

Has/Had the individual experienced one or more head injuries AFTER MSA diagnosis?

dataMSA©

Pre/Post Diagnosis