Re: Re: Werre and my introduction

February 22, 2002

Hi Zack, I couldnot agree with you more. Your fellow

MSA friend Bob Louisville, Kentucky. Say hello to

your wife from Judy and I. Bob

> Werre,

>

> First, as you know, it is rare to have MSA so young. Considering that

> fact, the course that leads to MSA in those cases may be all that

> much different. So, the course may not be normal. But, we already

> admitted that I was rare. Additionally, it is not the case as I see

> it that the MSA sat dormant. (Do we know exactly what that would

> mean?) Rather at this point, I could be said to have developed a

> neurological picture that suggests MSA (AFTER years of previous

> autonomic dysfunction).

>

> Second, I have seen top-notch doctors for years. Currently, I am

> seeing a couple of well-respected specialists in MSA.

>

> So, to continue, I was not seeking a diagnosis from you. POTS and PAF

> with an infection, how did you come up with that? Sure, I had what

> could be considered POTS before. But now, there is a whole

> constellation of symptoms including abnormalities in my neurological

> workup. I am not trying to be deragotary, but perhaps you stepped a

> little out of your league. Why the presumption that I do not or may

> not already know many of things you pointed out in the last part of

> your post? i.e. lend some respect to those who have been in the

> medical arena for years.

>

> I am not planning on posting on the board very often; however, I

> would appreciate a little more tact and care when you do post to me.

> Most of the people on the board go through a lot in the diagnosis end

> of this illness and related ones. It just seems to me that it is

> useful to find out a little more about their story and welcome them

> before picking apart their picture and suggesting alternatives. The

> last thing anyone on this board needs is more doubt in regards to the

> severity of what they are going through. Rather, what most people

> come to this board for is support.

>

> Cheers,

>

> Zac

> _________

>

> > > Hi age 27,

> >

> > While you seem to have many symptoms of MSA (and some that are not

> usually found

> > with MSA), some things do not seem to fit. You mention that you

> had autonomic

> > dysfunction at age nine and are now 27 years old, that is certainly

> not normal

> > for MSA. Did you see a movement disorder specialist for a

> diagnoses? MSA

> > patients are usually in a wheelchair (fulltime) by 5-7 years.

> >

> > Dystonia is permanent spasm (not 15 minute spasm) which draws the

> body part into

> > an " alien hand " type of thing which can not be moved. It takes

> medicines or

> > Botox shots to get the hand or body part to move. Dystonia is rare

> in pure

> > MSA. Although a lack of exercise can cause it even in MSA.

> >

> > You mention " spaciness/confusion " which is a sign of infection with

> any brain

> > disorder. However, it too, is rare in MSA.

> >

> > Since all the rest of this (other than autonomic problems) came on

> in the last

> > 3-4 months, I would strongly suggest that you get tested for

> infection (all

> > types). You could have PAF, POTS or some other lessor brain

> disorder with an

> > infection which is causing the problem. MSA does not appear and go

> that far in

> > 3-4 months after sitting dormant for 18 years.

> >

> > Other things that could be involved - were you told not to take

> alcohol or

> > barbiturates with those medicines? Did you know that

> pseudoephedrine

> > (ingredients in many cough/cold combination products) could be

> harmful to you

> > while on those medicines? Does the doctor that diagnosed you as

> MSA know that

> > you are taking the Atenolol? Be SURE you tell every doctor ALL of

> the medicines

> > AND 'natural supplements' you are taking, they are not

> mindreaders. What they

> > do not know, could kill you.

> >

> > Take care, Bill Werre

> >

> > ========================================================

> >

> > >

> > > Subject: Introduction-Age 27

> > >

> > > >

> > > > I have been reading posts for a little over a month, and it is

> time

> > > > for me to briefly introduce myself. It is my birthday today,

> age 27.

> > > >

> > > > I was diagnosed with probable MSA at the end of 2001 despite my

> young

> > > > age. I was pursuing PhD studies at the University of Chicago

> when a

> > > > tremor in my right hand appeared October 2001. Mind you, I have

> had

> > > > autonomic dysfunction dating back to nine years of age, but my

> > > > bloodpressure was in October no longer holding on many days

> even with

> > > > 45mg/day of Midodrine. Things seemed to go downhill starting

> with a

> > > > spell where I felt as if I was in an earthquake-I fell down

> unlike

> > > > any of the hundreds of other falls when my bp dropped. The list

> of

> > > > symptoms grew each week: tingling/numbness on my right side,

> > > > spaciness/confusion, loss of balance, stuttering at times, my

> right

> > > > leg dragged, seizure like spells (w/o the mental accompaniment),

> > > > tremor migrates at times to left side,... Now, I heaviness on my

> > > > right side at times (esp my right arm), severe bladder spasms,

> > > > terrible full body muscle contractions (dystonia?) that can last

> > > > fifteen minutes with pauses dispersed throughout... Looking

> back, I

> > > > noticed some small things over the past year including how I

> tripped

> > > > occassional even on days when I felt well. It ends up that my

> right

> > > > foot drops limp at times. I cannot think right now what other

> > > > symptoms I am leaving out. I am in a wheelchair about half the

> time

> > > > (on good weeks less). But, of course, the wheelchair keeps me

> active

> > > > and safe, especially when I am having bad bouts of spaciness

> and lack

> > > > of balance. Additionally, I can do more in the wheelchair w/o

> getting

> > > > tired. I hope to soon get push assisted rims, though, b/c I

> cannot

> > > > often push my self for long periods owing to my weakness on my

> right

> > > > side, etc.

> > > >

> > > > To continue, my wife, who has been amazing, left a job she

> loved. I

> > > > took a leave of absense from school. Now, we are living near

> family

> > > > in Georgia (my wife works part-time at my parents' furniture

> store).

> > > > My spirits are good most of the time. Recently, I have had some

> > > > depression-mostly b/c it is hard having so much family around

> > > > asserting opinions, etc., and of course the illness is hard at

> times.

> > > > I hope to soon regain the peace I have had at times through the

> > > > course of this illness.

> > > >

> > > > I am sure many of you have questions. Feel free to ask. My

> > > > medications are Midodrine: 10 mg every 5 hours w/ 5mg mid-doses

> > > > between (45 to 50 mg/day), Florinef .05 AM .05 PM, Atenolol

> 62.5mg

> > > > AM, 50mg PM, Potassium Chloride, Magnesium Chloride, and anti-

> > > > cholonergic for bladder spasms. (lots of water, no caffeine,

> little

> > > > sugar, no MSG, no nitrates, etc.)

> > > >

> > > > It is wonderful to see such a great group of people helping each

> > > > other. And it is great to know that people are right there if

> you

> > > > have questions about MSA.

> > > >

> > > > Thank you.

> > > >

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

> > > > unsubscribe by sending a blank email to

> > > >

> > > > shydrager-unsubscribe@y...

> > > >

February 22, 2002

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

February 22, 2002