Survey Topic Broadened

[Guest guest]

I think Pam or someone was trying to get us to see if the symptom

list needed updating. Perhaps it does. Vision was not the only

thing that the docs said was not a problem with MSA. There was even

discussion (which actually came full circle) about dementia.

A patient's spouse was commenting on how her spouse was first Dx with

PD, then changed to MSA, and now the docs seemed to say if Dementia

then he wasn't MSA. However, before it ended, the doc seemed to flip-

flop back around and say it could indeed be MSA.

I'm just looking for any way we can help these docs out. I think

lots of times they don't know what our symptoms are - because we

don't tell them all of our symptoms. We just answer their

questions. In my humble view (and I'm not being facitious here) we

are - to a great degree - the " experts " with regard to what is

experienced with MSA, and need to share our " knowledge " with the docs

as much as they do with us.

Well, probably said too much already. Just trying to help. This was

the only truly frustrating part for me this weekend... was when a

doc told my wife " your husband doesn't have MSA because he talks too

well " . Of course, he doesn't know how well I used to talk, and think.

Oh yeah... that was another one... (If I understood and recall

correctly - and many debate that with me :-) then...) Memory

problems are also not a symptom of MSA. As I have probable TIAs,

perhaps that is true... just seems others have posted about similar

problems. In fact, I think Doug and I talked about that today.

Again, I really think it would be beneficial for the docs if we could

get a more inclusive list of what we all experience - so that they

could know. I will give them credit - much in fact - because they

did not present as " know it alls " and when enough of us commented on

things, they seemed to admit that perhaps " X " was a symptom. (But,

given my mind nowadays... perhaps I'm off on this... others who

attended the conference, please feel free to CHIME in here :-)

Catch everyone later. Tomorrow we'll be on the road home.

[Guest guest]

:

You are so right. Many doctors know little about this disease. The

trick is to find one who is willing to learn from what we tell them rather

than think he knows it all. Once when I visited my Internist for myself she

told me that she and Ken's Neurologist had been discussing me, and that the

Neurologist had told her that I knew more about this disease than most

doctors. Ken's Neurologist was always ready to hear anything I sent to her

and to try things I had heard about on this list. Because of this, Ken was

probably the first patient in Orange County to benefit from Midodrine and one

of the first with PD to benefit from Aricept(at least in his doctor's

office). Our doctor also helped us get Deprenyl from Europe when it was not

available here because I had gotten her the name of a doctor in Vienna who

would write the prescription if she wrote to him.

Barbara