Re: Re: Werre -Bill

[Guest guest]

Bill,

Jim Todd had " failure to thrive " at a very young age. He had symptoms and

signs of Shy Drager for most of his life, (although they didn't officially

diagnose it until later).

later and hugs,

cindy

Re: Re: Werre and my introduction

> Zac,

>

> Sorry if I sounded abrupt, but I am an engineer and tend to analyze

things.

> You are welcome here always. I am sorry that you had to look for us.

>

> I was not trying to diagnose you, only suggesting that there are other

less

> serious disorders which could be causing the same type of symptoms,

> especially with infection involved. I did not know you had been seeing

MSA

> specialists for years as you did not say that in the email, unless I did

not

> understand it. My impression was that other than autonomic failure,

> everything started last October of last year. That is certainly " rare "

> (non-existent before you) for MSA. Tim Foley was diagnosed as PD first

and

> he is young. I know that every patient is different. I do hope you have

> been checked throughly for all forms of infection.

>

> I have been involved in reading about MSA for about 7 years, and have

never

> read of anyone having MSA at nine years of age. You are correct, that it

> could be a progression of some other disorder. I am not saying it is not

> MSA, only that is is NOT normal for MSA. We usually get people on the

list

> that do not know a thing about MSA and often feel they only have a few

years

> to live. I have NEVER heard of a new set of symptoms showing up and

getting

> a diagnoses of MSA within the time period you indicated. If the

progression

> was slow over a year or two before that, then let us know as this is all a

> new experience for us. Many here have had indefinite diagnoses for five

> years, even after going to experts such as Vanderbilt, Baylor, Mayo, and

> NIH. Not many here know about their neurological signs such as

cogwheeling,

> extrapyramidal effects or even words like ataxia and dysphagia.

>

> Infection is the worst enemy of MSA (and all brain disorder) patients and

> MUST be suspected at all times. I strongly advise patients and caregivers

to

> keep track of symptoms, BP, temperature, etc. and work with their doctors

to

> find the best treatment for themselves. You ARE CORRECT in that no two

> patients exhibit the exact same progression or symptoms with MSA.

>

> I for one, would be greatly interested in hearing more about any changes

> small or large noticed over the years in your neurological work-ups. Some

> place, I still have my wife's stuff and would like to see similarities

and/or

> differences. Note that even though she was diagnosed as MSA at NIH in

1995,

> several neurologists were still reluctant to say more than "

extrapyramidal

> disease, dyskinesia/tardive dys, gait difficulty, imbalance, orthostatic

> hypotension, dysphagia and dystonia " even at the end six years after NIH

and

> almost 12 years after a diagnoses of PD. Since she refused an autopsy,

and I

> honored her wishes, we will never know for sure.

>

> Sorry if I offended you in any way, I was only offering a suggestion in

> looking for causes.

>

> Take care, Bill Werre

>

>

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>