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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. > > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com