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Pam>Re: Post mortem

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Thanks Pam. I guess :-)

I was kinda under the understanding that with what Deborah had done,

they were able to say definitely she did not have MSA. Remain

confused. But I'll go ahead and have tests recommended by docs.

This round anyway, but if they don't find what they're looking for, I

think this will be the last. (Given your NIH " plan " reference,

they've already pretty well narrowed it as much as it can be - all

the more true after this next series. I could always have more -

like specific genetic studies and all - but... have to wonder at what

point " enough " is enough :-)

Thanks again,

> Hi , Yes as far as we know right now autopsy is the only " for

sure " way

> to know if it was MSA or one of the many similar disorders. This

is because

> there are abnormalities in the actual brain cells that can be seen

under a

> microscope. In MSA these abnormalities are called Glial Cytoplasmic

> Inclusions. As far as I know there is no scan that exists today

that can

> see these inclusions in a living person. Scans like MRI and PET on

a living

> person can give doctors clues as to what parts of the brain are

affected,

> from these clues they form opinions on a " probable " diagnosis.

>

> Take care,

> Pam

>

> Post mortem

>

>

> > Well, there are those words again... I just (finally) read the

> > Vanderbilt site on MSA. Their concluding remarks included a

> > statement that the only way to truly know if it is MSA is via post

> > mortem autopsy. I'm confused :-) Don't want to hit the beehive

with

> > a stick or anything. Just confused.

> >

> >

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Deborah's doctors have formed that opinion yes, based on all the evidence

they have observed in her tests. Changes in opinion on diagnosis happen all

the time.

There have been others in this forum who have had doctors change their

diagnosis. I know people who were originally diagnosed with MSA who were

later rediagnosed with POTS or PAF for instance... in fact someone famous

(ny Cash) was told he had MSA/Shy-Drager several years ago and later his

diagnosis was changed to Diabetic Neuropathy. Changes in diagnosis do

happen before autopsy based on the collective evidence of clinical symptoms

observed and various scans and tests. I doubt any doctor would only look at

one test in order to form their opinion on the likely diagnosis of MSA.

Please read this information at this website and share with your doctors.

http://www.emedicine.com/neuro/topic671.htm It does specify the recommended

guidelines for diagnosing Multiple System Atrophy. Also note the section

called " Workup " which lists all the tests which can aid the doctors in

forming their opinion on diagnosis.

Take care,

Pam

Pam>Re: Post mortem

> Thanks Pam. I guess :-)

>

> I was kinda under the understanding that with what Deborah had done,

> they were able to say definitely she did not have MSA. Remain

> confused. But I'll go ahead and have tests recommended by docs.

> This round anyway, but if they don't find what they're looking for, I

> think this will be the last. (Given your NIH " plan " reference,

> they've already pretty well narrowed it as much as it can be - all

> the more true after this next series. I could always have more -

> like specific genetic studies and all - but... have to wonder at what

> point " enough " is enough :-)

>

> Thanks again,

>

>

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