Re: Werre and my introduction

[Guest guest]

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...

> > >

> > >

> > >

> > >

> > >