Re: Fw: shy-drager syndrome

[Guest guest]

I'll write her Pam

Bill

--------------------------------

Pam Bower wrote:

> Could someone please write to Pat and get her on the list. I'm really,

> really swamped and trying to catch up.

>

> Thanks!

> Pam

[Guest guest]

Pat, I'm not much help to you but I sure can relate to

you email. My neurologist is in Dallas which is about

four hours away from Tulsa where we now live. I don't

think there is one person who knows any thing about

this disease in Tulsa. My other doctors have heard of

it in medical school but I am there first real life

experience. And I don't even know enough about it

myself yet. I was in the hospital about a month ago

and felt like there was no one in the whole wide world

to answer my questions. Thank goodness I was able to

find this Internet site hopefully I will learn enough

about MSA to help myself and others. I thought I

could teach friends family and my doctors about my

disease so they could understand better. How very

wonderful to hear from someone with the same

experience. Connie Greer

--- Pam Bower pbower@...> wrote:

> Could someone please write to Pat and get her on the

> list. I'm really,

> really swamped and trying to catch up.

>

> Thanks!

> Pam

>

> shy-drager syndrome

>

>

> >

> > Dear Pam,

> >

> > I was looking through information on shy-drager

> syndrome and your name

> seems to come up quite frequently so I thought I

> would write to you.

> >

> > I am fairly new at sending e-mails or writing to

> people I don't know but I

> thought I would give it a shot.

> >

> > My Mother was diagnosed with msa back in aug 01.

> It seems like ever since

> then we've been on this worldwind of a ride. I

> thought maybe you could help

> me to understand some of this. She is in the

> hospital at present after a

> fall. She has uti and went through about 3 days of

> not knowing who I was.

> The nurse told me that it was like snapping your

> finger and she was coming

> back to herself. She was confused and didn't know

> what was going on. Her

> primary doctor is new at dealing with this also.

> Her neurologist is in st.

> louis and not on staff at the hospital where she is,

> so her dr. consulted

> another neurologist. I guess what I needed to do is

> talk with someone who

> has the same problems or dealing with someone who

> has them. Just when we

> start getting used to one change something else

> comes along and throws us

> for a loop. Any and all information would

> definately be appreciated.

> >

> > Thanks for your time and hopefully help!

> >

> > Sincerely pat

> >

> >

> >

> >

> >

> > ---------------------------------

> >

[Guest guest]

They know as much in Vancouver, I'm not going back to any

hospital unless I'm found unconcsious. Afraid they're going to make

it worse. I do have a GP who takes and interest in the Shy

Drager. The gynecologist had been properly informed but also had no

knowledge to offer me. Just what did people do before the

internet?

At Tuesday 6/11/02 06:30 PM, you wrote:

Pat, I'm not much help to you but I

sure can relate to

you email. My neurologist is in Dallas which is about

four hours away from Tulsa where we now live. I don't

think there is one person who knows any thing about

this disease in Tulsa. My other doctors have heard of

it in medical school but I am there first real life

experience. And I don't even know enough about it

myself yet. I was in the hospital about a month ago

and felt like there was no one in the whole wide world

to answer my questions.

aletta mes

vancouver, bc

Canada

web:

http://aletta.0catch.com