Re: Re: Werre and my introduction

[Guest guest]

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...

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

HELLO I WAS WANTED TO ASK A QUESTION.I AM ON

MEDICAID,AND MY DAUGHTER JUST GOTMME ON HER INS.I

FINALLY GET TO GO SEE DR.CHESHIRE HERE IN JAX.FLA.AND

HE HAS SET UP FOR ME TO HAVE A LOT OF TEST DONE.HE IS

NOT SURE WHAT I HAVE,EVEN THOW MY OTHER DR. IS SAYING

IT IS MSA,BUT NOW THEY ARE NOT SURE.DOES ANYONE KNOW

IF YOU CAN HAVE ANOTHER INS.SINCE MY DAUGHTER WAS ABLE

TO PUT ME ON HERS,SHE DID THIS HOPING THAT THEY COULD

FIND OUT WHAT IS GOIUNG ON WITH ME.PLUS THEY SET UP

ALL THESE TEST AND IT IS LIKE ONE HOUR DRIVE AND DUE

TO ME HAAVING TO DEPEND ONOTHERS I AM AFRAID THAT I

CAN,T MAKE IT.IT IS AT THE MAYO CLINIC AND I HAVE TRY

FOR SO LONG TO GET WITH THEM NOW I AM AFRAID THAT I

HAVE HAVE TO CONCEAL DUE TO THEY SAY THAT THEY CAN,T

GET OFF OF WORK WHICH I UNDERSTAND.I AFRAID COMMITTED

TRANSPORTATION WON,T TAKE ME DUE TO ME USING ANOTHER

INS.PLEASE IF YOU KNOW OF WHAT I SHOULD DO LET ME

KNOW.I THOUGHT I FINALLY WAS GOING TO FIND SOME ANSWER

ON TO WHAT IS GOING ON WITH ME NOW WHAT.I HAVE EVEN

TRY A CAB BUT THEY COST A FORTURE.THANK YOU FOR ANY

SUGGESTION JANICE HARRELL 1-

--- robert.miller27@... wrote:

> 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

>

=== message truncated ===

__________________________________________________

[Guest guest]

HELLO I WAS WANTED TO ASK A QUESTION.I AM ON

MEDICAID,AND MY DAUGHTER JUST GOTMME ON HER INS.I

FINALLY GET TO GO SEE DR.CHESHIRE HERE IN JAX.FLA.AND

HE HAS SET UP FOR ME TO HAVE A LOT OF TEST DONE.HE IS

NOT SURE WHAT I HAVE,EVEN THOW MY OTHER DR. IS SAYING

IT IS MSA,BUT NOW THEY ARE NOT SURE.DOES ANYONE KNOW

IF YOU CAN HAVE ANOTHER INS.SINCE MY DAUGHTER WAS ABLE

TO PUT ME ON HERS,SHE DID THIS HOPING THAT THEY COULD

FIND OUT WHAT IS GOIUNG ON WITH ME.PLUS THEY SET UP

ALL THESE TEST AND IT IS LIKE ONE HOUR DRIVE AND DUE

TO ME HAAVING TO DEPEND ONOTHERS I AM AFRAID THAT I

CAN,T MAKE IT.IT IS AT THE MAYO CLINIC AND I HAVE TRY

FOR SO LONG TO GET WITH THEM NOW I AM AFRAID THAT I

HAVE HAVE TO CONCEAL DUE TO THEY SAY THAT THEY CAN,T

GET OFF OF WORK WHICH I UNDERSTAND.I AFRAID COMMITTED

TRANSPORTATION WON,T TAKE ME DUE TO ME USING ANOTHER

INS.PLEASE IF YOU KNOW OF WHAT I SHOULD DO LET ME

KNOW.I THOUGHT I FINALLY WAS GOING TO FIND SOME ANSWER

ON TO WHAT IS GOING ON WITH ME NOW WHAT.I HAVE EVEN

TRY A CAB BUT THEY COST A FORTURE.THANK YOU FOR ANY

SUGGESTION JANICE HARRELL 1-

--- robert.miller27@... wrote:

> 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

>

=== message truncated ===

__________________________________________________

[Guest guest]

HELLO I WAS WANTED TO ASK A QUESTION.I AM ON

MEDICAID,AND MY DAUGHTER JUST GOTMME ON HER INS.I

FINALLY GET TO GO SEE DR.CHESHIRE HERE IN JAX.FLA.AND

HE HAS SET UP FOR ME TO HAVE A LOT OF TEST DONE.HE IS

NOT SURE WHAT I HAVE,EVEN THOW MY OTHER DR. IS SAYING

IT IS MSA,BUT NOW THEY ARE NOT SURE.DOES ANYONE KNOW

IF YOU CAN HAVE ANOTHER INS.SINCE MY DAUGHTER WAS ABLE

TO PUT ME ON HERS,SHE DID THIS HOPING THAT THEY COULD

FIND OUT WHAT IS GOIUNG ON WITH ME.PLUS THEY SET UP

ALL THESE TEST AND IT IS LIKE ONE HOUR DRIVE AND DUE

TO ME HAAVING TO DEPEND ONOTHERS I AM AFRAID THAT I

CAN,T MAKE IT.IT IS AT THE MAYO CLINIC AND I HAVE TRY

FOR SO LONG TO GET WITH THEM NOW I AM AFRAID THAT I

HAVE HAVE TO CONCEAL DUE TO THEY SAY THAT THEY CAN,T

GET OFF OF WORK WHICH I UNDERSTAND.I AFRAID COMMITTED

TRANSPORTATION WON,T TAKE ME DUE TO ME USING ANOTHER

INS.PLEASE IF YOU KNOW OF WHAT I SHOULD DO LET ME

KNOW.I THOUGHT I FINALLY WAS GOING TO FIND SOME ANSWER

ON TO WHAT IS GOING ON WITH ME NOW WHAT.I HAVE EVEN

TRY A CAB BUT THEY COST A FORTURE.THANK YOU FOR ANY

SUGGESTION JANICE HARRELL 1-

--- robert.miller27@... wrote:

> 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

>

=== message truncated ===

__________________________________________________