Re: New Member

[Judy George <judy_george@xxxxxxxxxxx>]

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 <boba@xxxxxxxxxxxx>
> Reply-To: Parkinson's Information Exchange Network
> <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
> To: PARKINSN@xxxxxxxxxxxxxxxxxxxx
> 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" <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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