Re: MSA or not

[Guest guest]

Hi ,

Since there is no definite test a person can take for MSA that diagnosis is

a matter of opinion but the opinion should only be given after many tests to

rule out other disorders and careful observation of all symptoms. If I'm

reading your letter correctly one doctor has been of the opinion it is MSA,

the other doctor has some doubt based on the fact that your husband doesn't

show the low blood pressure symptom.

I suggest you print out this article:

http://www.emedicine.com/neuro/topic671.htm

Take it back to the doctor(s) and have him/her read the sections on

diagnosing MSA.

Specifically make sure he/she reads

Table 2. Clinical Domains and Features in Diagnosis of MSA

and

Table 4. Diagnostic Categories of MSA

Using those two tables as a guide ask for clarification on which symptoms

your husband now demonstrates and ask for justification of the diagnosis of

MSA or not MSA. Ask whether he/she feels your husband has Possible MSA or

Probable MSA. My guess right now based on what you've said would be he is

only in the Possible MSA category. Many on this list are in the same boat

and are waiting to see if more symptoms develop. According to Dr. Sid

Gilman's (U of Michigan, Ann Arbor) research about 25% of people with

sporadic cerebellar ataxia will progress to develop MSA within 5 years of

first symptom onset. How long has it been for your husband?

I also suggest that since your husband was told by one doctor that he had

MSA that that might make him eligible to participate in the MSA Study

proposed by Dr. Cliff Shults and his group. I encourage you to fill out the

questionnaire that was posted to the list last night. Only with more

research can a specific test for MSA be developed... not to mention possible

treatment options.

Hugs,

Pam

> Hello Everyone: Me again

>

> After two years of running to any doctor who would listen we are

completely

> exhausted. My husband was diagnosed by Hospital in St. Louis, MO

> with MSA (Neurologist Diagnosed him). THe neurologist added that it was

> really to early for all the signs to appear. Soooooooooooooooo I took my

> husband to another physician who supposedly specialized in MSA in

> Springfield , IL. Well guess what that specialist says NO to MSA because

> the only symptom that my husband doesn't have YET out of the list is low

> blood pressure. The Springfield Dr. says some form of ATAXIA?????? When

I

> asked for more specifics of course I was treated like I had four eyes.

> Now my husband has had to go back to his family doctor for his eyelids not

> wanting to stay open, pain in his legs, not being able to get from a

> sitting position to a standing position and bowel/urine incontinence.

>

> Seems like I only email this group when I have gone to my limit. Any

> suggestions? We see the Neurologist in Springfield this Thursday again.

> Wish there was a pill for my husband to take to make this all so much

> better. If anything I am totally frustrated with wondering does he have

it

> or does he not. Please do not come back and say well autopsy is the only

> definite way of telling. We had one Dr that we walked out on because he

> told my husband, " If you would allow me to autopsy your brain I would be

> able to tell you. " Needless to say we haven't gone back to that

Physician.

>

> Hugs

>

> Yates, CPC

> Office of Corporate Compliance

> Southern Illinois HealthCare

> Compliance Auditor

> 1239 E Main

> Carbondale, IL 62901

> Ex: 67037

> Fax: 618 -351-6380

>

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