bob/cecily/kathy
my neurologists answer was
'i cant look you in the eye and say you havent got parkinsons disease'
i am to return in a month or so but i now have better knowledge based on
material from this site and i am still unsure about the diagnosis as i have
symptoms which could be either pd or familial tremors
it is very confusing
judy


>From: Bob Anibal <[log in to unmask]>
>Reply-To: Parkinson's Information Exchange Network
><[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: New Member
>Date: Wed, 26 Apr 2000 07:42:56 -0400
>
>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" <[log in to unmask]>
>To: <[log in to unmask]>
>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" <[log in to unmask]>
> > >Reply-To: Parkinson's Information Exchange Network
> > ><[log in to unmask]>
> > >To: [log in to unmask]
> > >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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