new diagnosis

August 9, 2000

,

I'm sorry you have to be here on this list. Where do you live? I think I

know another person by your name and I'm in such a small place, you can't

possibly be the person I know???

Love, Prayers and E-hugs, (((( ))))

Bushnell :-)

new diagnosis

> My dear ex-husband( yes there is such a thing) whas diagnosed just last

> week. Monday I had never heard of Shydrager now I feel like it has

> always been a heavy load to carry.

> I would love to hear from people who have just been diagnosed so I can

> help with his care/

> Sabo

>

> >my husband was diagnosed yesterday with MSA. he has many neurological

> >symptoms..off balance, swallowing problems and most of all much

> >difficulty with speech. it is difficult to understand him. As first the

> >neurologist said he had a parkinson like disease & he was put on

> >simemet, which didn't help anything. As of yesterday, the dr. told him

> >there is no medicine for this disease & nothing he can do for him. I

> >would appreciate hearing from someone out there with similiar symptoms &

> >an explanation of MSA. thanks.

> >

August 9, 2000

linda..we live in margate, fl. I've gotten so much info in such a short

time..it's wonderful to have this group of support . jerrie

August 9, 2000

,

Hi and WELCOME!

My name is Becky. Below are some links for you. Also, I have just ordered

some actual reports from Dr's worldwide on this disease through loansome.doc and

will be glad to forward them to you when I get them. Should be in e-mail format

and within a week or two. This list is a GREAT resource.

http://www.mc.vanderbilt.edu/gcrc/adc/msa.html

<http://www.mc.vanderbilt.edu/gcrc/adc/msa.html>

http://www.ndrf.org/MSA.htm <http://www.ndrf.org/MSA.htm>

http://www.hooked.net/~ccjm/shy-drager

<http://www.hooked.net/~ccjm/shy-drager>

http://www.ninds.nih.gov/patients/disorder/shydrger/shydrger.htm

<http://www.ninds.nih.gov/patients/disorder/shydrger/shydrger.htm>

http://www.wwa.com/~claudec/shydrage <http://www.wwa.com/~claudec/shydrage>

http://health.yahoo.com/health/Diseases_and_Conditions/Disease_Feed_Data/Shy_Dra\

ger_syndrome

<http://health.yahoo.com/health/Diseases_and_Conditions/Disease_Feed_Data/Shy_Dr\

ager_syndrome>

/

Re: new diagnosis

This morning I went with my ex to his psycologist..... he had not even

heard of this.... but he wants me to forward some addresses of web

sites... I said I would.

A. Sabo

mailto:sabol@...(Sabo)

August 9, 2000

This morning I went with my ex to his psycologist..... he had not even

heard of this.... but he wants me to forward some addresses of web

sites... I said I would.

A. Sabo

mailto:sabol@...(Sabo)

August 12, 2000

Aat Mayo Clinic I had two tests which did not definitely say mSA, but were

indicators that it was. One was a sweat test and the other was a tilt table

test for BP. Was told Mayo was only place in this country these tests are

given. True or not, I have no way of knowing.

Barbara P.

August 12, 2000

what are the best tests that determine if the diagnosis is really MSA or

is it determined by ruling out other neurological diseases by

observation? my husband's only tests were several mri (negative) and an

electrical test to rule out ALS. his symptoms are mainly speech &

balance, and I far as I can determine from all my new friends on this

list, their symptoms are different (bp & frequency). would appreciate

feedback. thanks,jerrie

August 12, 2000

Jerrie,

I don't know whether this answers your question, but was your husband's MRI

open or closed? My first MRI was open and read negative. My neuro had me

take another--closed--it showed MSA-SND. I also felt the disease was

progressing too rapidly, I wasn't responding to Sinemet, and I had no

tremor. Sadly, they say, an autopsy truly reveals MSA.

Sophia Fohm

new diagnosis

> what are the best tests that determine if the diagnosis is really MSA or

> is it determined by ruling out other neurological diseases by

> observation? my husband's only tests were several mri (negative) and an

> electrical test to rule out ALS. his symptoms are mainly speech &

> balance, and I far as I can determine from all my new friends on this

> list, their symptoms are different (bp & frequency). would appreciate

> feedback. thanks,jerrie

>

August 12, 2000

Dear Sophia:

thanks for responding. My husband had 5 mri(s), 1 open & 4 closed...all

negative. What other tests were performed? What were your symptoms? I

hope everything is under control for you. jerrie

August 13, 2000

I have had the tilt test at both Vanderbilt in Nash,tn and I believe they do

it in Birmingham ala at Medical Center. I'm not sure what the sweat test is

but Vandy also does the 'ice water test'.Hope this info helps.

Re: new diagnosis

Aat Mayo Clinic I had two tests which did not definitely say mSA, but were

indicators that it was. One was a sweat test and the other was a tilt

table

test for BP. Was told Mayo was only place in this country these tests are

given. True or not, I have no way of knowing.

Barbara P.

August 13, 2000

Barbara,

I was given the tests here in Baton Rouge, Louisiana.

God Bless,

Jim Stark

Re: new diagnosis

> Aat Mayo Clinic I had two tests which did not definitely say mSA, but were

> indicators that it was. One was a sweat test and the other was a tilt

table

> test for BP. Was told Mayo was only place in this country these tests are

> given. True or not, I have no way of knowing.

> Barbara P.

>

August 13, 2000

Greetings Jerrie!

Sorry your husband is having such a time of it. You wondered:

> what are the best tests that determine if the diagnosis

> is really MSA or is it determined by ruling out other

> neurological diseases by observation?

Most medical diagnoses consist of ruling out options. When doing that,

doctors try to hunt for common problems first. There's an old medical

phrase that sums it up. " When you hear hoof beats, look for horses, not

zebras " . So, the MRIs and other tests attempt to eliminate possible

problems. For example, multiple sclerosis or brain tumors would show up

quite clearly on the MRIs.

Unfortunately, MSA does not have a definitive diagnosis at this point

(except in post mortem ... do Doc, I'm NOT that interested in a definitive

diagnosis!). Making it more complex, it appears that it comes in three

basic 'flavors'. Think of neopolitan ice cream. Some people have very

specific autonomic nervous system problems (such as problems with blood

pressure). Others have problems with movement, showing Parkinson type

symptoms. And finally some have problems with their cerebellum (such as

with balance and speech). Old names for these were Shy-Drager Syndrome

(SDS), striatonigral degeneration (SND), and sporadic olivopontocerebellar

atrophy (OPCA). An article that might help better understand this:

http://emedicine.com/NEURO/topic229.htm

In the early stages of this, specific types of symptoms tend to prevail. As

it progresses, symptoms from other categories tend to appear. Going back to

the ice cream example. I have Sporadic OPCA ... or per that article

Cerebellar Dysfunction. No doubt about that. Gait Ataxia, the nystagmus

and problems with limb ataxia. And when I get tired, I also have problems

with slurred speech. So at this point it's " Possible MSA " .

Also, in the early stages an MRI may not clearly show loss of nerve cells.

However, a PET scan (much more expensive ... and possibly not covered by

insurance) probably would show decreased activity in certain areas of the

brain.

But do I have MSA? I don't have blood pressure problems, but have started

to have problems with bladder and bowel movements. ( It's so much fun as a

43 year old to have toddler-like problems again! ) But it's not definitive

enough for a probable diagnosis. I also have some Parkinsonian symptoms

appearing. Rigidity. My toes do NOT move much anymore. I watch my wife

and kids flex theirs and wonder if mine ever moved THAT much! ;-)

Even with a diagnosis of Probable MSA, the treatment would not very that

much. At this point the treatment consists of managing the symptoms as best

as possible. I am content with that. Keep the quality of life as high as

possible. And on my part, I need to try to get on with living. It's hard

and discouraging at times. But life does go on.

To that end, might I suggest a book that can help?

A Delicate Balance : Living Successfully With Chronic Illness

by Milstrey Wells

I've read it and highly recommend it. As I continue along this personal

journey, I find this book provides a valuable insight into my own

experience. No cure, but it does make it easier to know that how I feel

about my situation is normal.

Finally, you mentioned ...

> would appreciate feedback.

Bet you weren't expecting an epistle! ;-) Neither was I when I started

this! But I do hope this helps explain some of MSA and how to live with

that possible diagnosis.

Regards,

=jbf=

B. Fisher

August 13, 2000

Well put, . You are lucky to be able to type so well.

Congrats in your new home.

Life does go on.

Sophia Dohm

reA Delicate Balance : Living Successfully With Chronic Illness

> by Milstrey Wells

August 13, 2000

Jerrie,

Although there are several new tests that seem to show MSA (and it's different

forms) - there is no one definative and universally test that I have heard of to

date. They still try to weed out known disorders and look at symptoms for the

rest of the diagnoses.

Sounds as if your husband may have MSA-C (used to be called OPCA). They

suspected this on Charlotte, but decided that the whole brain had atrophy and

not just the cerebellar pons. If there is no history of OPCA in his family it

would be sporatic OPCA.

Take care, Bill and Charlotte

deenzer@... wrote:

> what are the best tests that determine if the diagnosis is really MSA or

> is it determined by ruling out other neurological diseases by

> observation? my husband's only tests were several mri (negative) and an

> electrical test to rule out ALS. his symptoms are mainly speech &

> balance, and I far as I can determine from all my new friends on this

> list, their symptoms are different (bp & frequency). would appreciate

> feedback. thanks,jerrie

>

August 13, 2000

My ex doesnt have speech problems at all. jus t low blood pressure and

the stooped posture type Parkinsoian things.....

>what are the best tests that determine if the diagnosis is really MSA or

>is it determined by ruling out other neurological diseases by

>observation? my husband's only tests were several mri (negative) and an

>electrical test to rule out ALS. his symptoms are mainly speech &

>balance, and I far as I can determine from all my new friends on this

>list, their symptoms are different (bp & frequency). would appreciate

>feedback. thanks,jerrie

>

August 14, 2000

>it seems like all patients have different symtoms at the beginning... As I have said, speech and bowel ar not the problems yet.

What is this about aesbestos? my ex has asbestos shingles in this house and also in his last house.......

dEAR jERRIE

>

>MY DAD WAS DX MSA LAST WEEK, HE HAS BEEN MISDXED WITH PARKINSON LAST YEAR

>AND MS EARLY THIS YEAR. PROBLEM WITH MY DAD IS EXACTLY LIKE YOUR HUSBAND.

>BALANCING AND SPEECH, HE ALSO HAVE BOWEL PROBLEMS AND CANNOT CONTROL HIS

>BOWEL MOVEMENT. HE HAS TWO MRI SHOW NEGATIVE, WHICH RULED OUT MS. BP IS

>REGULAR. HE WALKS LIKE A DRUNK AND HAVE BEEN FALLING DOWN SEVERAL TIMES.

>RIGHT NOW, DOCTOR IS PUTTING HIM ON SINEMET AND HE IS SEEING A SPEECH

>THERAPIST AND MOVMENT DISORDER THERAPIST.

>

>HELEN

> new diagnosis

>

>> what are the best tests that determine if the diagnosis is really MSA or

>> is it determined by ruling out other neurological diseases by

>> observation? my husband's only tests were several mri (negative) and an

>> electrical test to rule out ALS. his symptoms are mainly speech &

>> balance, and I far as I can determine from all my new friends on this

>> list, their symptoms are different (bp & frequency). would appreciate

>> feedback. thanks,jerrie

>>

August 14, 2000

,

Asbestos became a no-no in the USA in the 70's. It is not nearly as dangerous

as they say, especially if you do not smoke. But it

is banned and if anyone goes to remove the shingles from the house, it will be

expensive to get rid of them. It is supposed to

cause cancer (speciffically lung cancer). However, I worked with asbestos a lot

during my life (not the South African blue

asbestos) and my lungs are fine. I do not and never have, smoked.

When the asbestos is sealed in something like a shingle, there is little danger

that is will get into your lungs. Actually there

are several semi-precious stones (like tiger eye) which are asbestos.

Take care, Bill and Charlotte

Sabo wrote:

> >it seems like all patients have different symtoms at the beginning... As I

have said, speech and bowel ar not the problems yet.

> What is this about aesbestos? my ex has asbestos shingles in this house and

also in his last house.......

>

> dEAR jERRIE

> >

> >MY DAD WAS DX MSA LAST WEEK, HE HAS BEEN MISDXED WITH PARKINSON LAST YEAR

> >AND MS EARLY THIS YEAR. PROBLEM WITH MY DAD IS EXACTLY LIKE YOUR HUSBAND.

> >BALANCING AND SPEECH, HE ALSO HAVE BOWEL PROBLEMS AND CANNOT CONTROL HIS

> >BOWEL MOVEMENT. HE HAS TWO MRI SHOW NEGATIVE, WHICH RULED OUT MS. BP IS

> >REGULAR. HE WALKS LIKE A DRUNK AND HAVE BEEN FALLING DOWN SEVERAL TIMES.

> >RIGHT NOW, DOCTOR IS PUTTING HIM ON SINEMET AND HE IS SEEING A SPEECH

> >THERAPIST AND MOVMENT DISORDER THERAPIST.

> >

> >HELEN

> > new diagnosis

> >

> >> what are the best tests that determine if the diagnosis is really MSA or

> >> is it determined by ruling out other neurological diseases by

> >> observation? my husband's only tests were several mri (negative) and an

> >> electrical test to rule out ALS. his symptoms are mainly speech &

> >> balance, and I far as I can determine from all my new friends on this

> >> list, their symptoms are different (bp & frequency). would appreciate

> >> feedback. thanks,jerrie

> >>

August 14, 2000

Hi, Jennie. My husband had the same tests with negative results, and his

symptoms are the same as your husband's - just the speech and balance. Not

emphasizing the just - they are major disabilities, as you know, but my husband

does not have the blood pressure problems either. A newly acquired electric

chair for lifting is proving quite beneficial. It is becoming more difficult

for Bob to rise from his chair, and when he does he tends to " lunge " toward the

next stable object. Very unsafe! (and hard on the object for which he lunges!)

I felt as you did when Bob was first diagnosed - is it really MSA? I now feel

it is - his symptoms certainly fit the diagnosis. I think you would benefit

from a recent piece I received through e-mail addressing how each case is

different - I found it very informative. What we learn is not always what we

want to learn, but the knowledge does help, as does hearing from others in the

same situation. My best to you,

Elaine Grimmesey

>>> 08/12/00 04:58PM >>>

what are the best tests that determine if the diagnosis is really MSA or

is it determined by ruling out other neurological diseases by

observation? my husband's only tests were several mri (negative) and an

electrical test to rule out ALS. his symptoms are mainly speech &

balance, and I far as I can determine from all my new friends on this

list, their symptoms are different (bp & frequency). would appreciate

feedback. thanks,jerrie

August 14, 2000

Greetings Elaine!

You noted about your husband:

> It is becoming more difficult for Bob to rise from his

> chair, and when he does he tends to " lunge " toward

> the next stable object. Very unsafe! (and hard on

> the object for which he lunges!)

LOL! I know the feeling. Recently, I find I learn a lot about how coping

with this disease by remembering my children as toddlers.

For example, if I'm on the ground (such as working on some computer wiring),

I must find a very stable place slightly elevated to help me stand. Just

like my kids. Or I do the 'spider stand' that toddlers do.

It's not a lack of muscle strength. It's a lack of ability to coordinate

everything to stand! I've had to ask complete strangers to help me stand.

Hard, but we can cope. We can go on and enjoy life as best as possible.

Not to say this isn't a hard and frustrating journey. Yet as you note

others share this path. That helps. A lot.

Regards,

=jbf=

B. Fisher

August 14, 2000

Greetings Helen!

You wrote about your father:

> ... Balancing and speech. He also has bowel problems

> and can not control his bowel movement ...

Boy! Do I understand. The speech problem only shows up when I get tired.

Even then most people don't notice. What you would notice is that I slow

down and become very deliberate as I talk. Years of speech and theater

help. The speech therapist should be able to help your father as well.

I wish I could offer some suggestions on the bowel movement problems. I've

had ongoing problems with very loose stools for the past three or four

years. Unfortunately, it's recently escalated. Embarassing to play

'Toddler' like that! Fortunately for me, I work from home, so this isn't

too much of a problem for me.

You also note " he walks like a drunk " . All I can say is " YUP! " . Best

advice I can provide came from my physical therapist, who noted that the

best way to help manage this is to exercise balance as much as possible.

Lots of frequent, short walks seems to help me. It doesn't make it go away.

Instead, it seems to help me 'remember' how to walk. I still have bad

problems early in the day or when I get tired.

Hope things go well with his visits.

Regards,

=jbf=

B. Fisher

August 14, 2000