Re: New Member

[Bob Anibal <boba@xxxxxxxxxxxx>]

When Cecily was first diagnosed approx 20 yrs ago by a neurosurgeon her
symptoms were very slight. We switched to a clinic that had movement
disorder specialists - the boss neurologist wasn't sure that Cecily had PD
so he took her off sinemet and had her come back in 2 weeks. He then decided
that she really did have PD  and set up a to get battery of tests for free
to be repeated periodically. The only obvious symptom at that time was in
her walking. He said that he had never seen anyone so early in the disease.
Another  movement disorder specialist in another clinic about 7-8 years
later wasn't sure either until she had Cec reduce medication for 2 weeks and
return.
So, these experts are not always sure as they would have us believe.
Bob A.
----- Original Message -----
From: "Kathy Link" <klink1@xxxxxxxxxxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Tuesday, April 25, 2000 10:19 PM
Subject: Re: New Member


Hello.  I posted a message about a week ago regarding possible Parkinson's.
Thank you for being so helpful.  Your responses helped me immensely in
obtaining information for my appointment with the specialist today.

You were so helpful, in fact, that I must share my experiences from today,
in hopes that some really good information flies back at me.

The specialist thinks my symptoms are too mild to actually diagnose as
Parkinson's.  And I'm thinking "Too mild?  What has to happen here?  Shall I
fall over dead?"  Just a little sarcasm.

She thinks I might be in the early signs of m.s.  I think the reason she
thinks it's ms and not Parkinson's is because of my age and gender.  The
next thing that I can do is have a PET scan.

Problem number 1: She's not really sure where the nearest PET scanner is.
Anybody out there know where one is?  Preferably in Wisconsin or one of the
surrounding states.

Problem number 2:  How do I get my HMO to pay for it?  Threaten to fall over
dead?  Seriously, is there some good buzz words I can throw out to ensure
fiscal assistance?

Any other obscure tests that I should be asking for?

Also, I am negotiating with my doctors regarding medication to help me
manage the three major symptoms.  Loss of balance, drooling, fatigue.
Anybody out there have good or bad experiences with drugs that control any
or all of these things?

Thanks much...


> >From: "Kathleen A. Link" <klink1@xxxxxxxxxxxxxxxx>
> >Reply-To: Parkinson's Information Exchange Network
> ><PARKINSN@xxxxxxxxxxxxxxxxxxxx>
> >To: PARKINSN@xxxxxxxxxxxxxxxxxxxx
> >Subject: New Member
> >Date: Tue, 18 Apr 2000 22:27:16 -0400
> >
> >Hello.  My name is Kathy, and I'm 30 years old, and I am in the
> process of
> >being diagnosed with Parkinson's Disease.  My neurologist is pretty sure,
> >but is sending me off to a Parkinson's Specialist next week to confirm.
> >
> >If I do have Parkinson's, I have had symptoms for the past 9
> years without
> >knowing it.  Thus, when I go to the specialist next week, would
> like to be
> >armed with some really intelligent questions and information regarding my
> >condition in terms of medication, what to do, what not to do etc.
> >
> >If you were me, what kinds of questions would you be asking?  Do
> you think
> >there's any danger of being mis-diagnosed?  Ever hear of anybody who was?
> >
> >This is all new to me, so I am very respectfully picking your brains.
> >  Thank you, in advance, for any information you can give me.
>
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