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>From: [log in to unmask] (Don Summers) >Subject: Re: Is it PD? - My story > >>From: [log in to unmask] (Don Summers) >>Subject: Re: Is it PD? - My story >> >>>From: [log in to unmask] (Don Summers) >>>Subject: Re: Is it PD? - My story >>> >>>>IS IT PD? >>>> >>>>The purpose of this communication is to raise again the question among PWP >>>>and care-givers: is it PD? >>>> >>>> I was diagnosed with PD in Feb., 1996. I had gone to my primary physician >>>>(pp) with a series of medical problems: depression, slow movement, memory >>>>problems, and gait instability. After some motor response tests, my pp sent >>>>me to a neurologist for a more extensive evaluation. At the end of the >>>>session the neuro said I may have PD. He prescribed Sinemet. He said that >>>>if my symptoms improved after a few weeks on Sinemet, then I have PD. He >>>>put me on Sinemet, 25/100, half pill 3x/day. My symptoms improved and >>>>I therefore had PD according to the neuro. >>>> >>>> My condition deteriorated to the point that, by mid-July, my voice was a >>>>high pitched, soft, monotone. I could not remember anything. I mean, if I >>>>went to the store, not only could I not remember where I parked, I could not >>>>remember if I drove. I began seeing a psychotherapist to baseline the memory >>>>problems. After memory testing, the therapist got the neuro to have me get >>>>an MRI. The MRI conclusively showed I had hydrocephalus, a rare condition >>>>the symptoms of which mimic PD exactly. But PD was not ruled out by the >>>>neuro. He felt I could have both PD and hydrocephalus >>>> >>>>I was immediately scheduled for a shunt implant to relieve the fluid >>>>pressure on the brain. When I reviewed my case history with the >>>>neurosurgeon, esp. the effect of Sinemet, he said that since no one knows >>>>exactly how Sinemet works, the fact that it might effect the symptoms of >>>>hydrocephalus is not surprising, thus putting into doubt the so called "gold >>>>standard" proof of PD. >>>> >>>>I had the operation on Aug. 1, 1996. Within a month my voice had returned >>>>to normal. As the damage caused by the hydrocephalus abated, other symptoms >>>>disappeared, leaving what may be permanent memory damage. This is typical >>>>of hydrocephalus. Finally, a week ago, my new neuro took me off Sinemet. >>>>No symptoms of PD reappeared. >>>>Therefore he has concluded that I do not have PD. >>>> >>>>I have a few comments about my involvement with PD. Theses are: >>>> 1. Get a second opinion. I believe the statistics indicate about 25% of the >>>>cases are misdiagnosed. >>>> >>>> 2. Do not believe one person or one dx. Question all conclusions. Develop >>>>expertise in your condition. Since there is no one with a greater interest >>>>in your condition than you, you must manage it. I found Medline on >>>>the Net as the source of information. Explore all other conditions >>>>which can mimic PD. >>>> >>>> 3. Have an MRI. It can eliminate some possibilities, such as a tumor or >>>>hydrocephalus. >>>> >>>> 4. Have a personal, medical advocate to help through the tough >>>>times, like my wife. >>>> >>>> >>>> >>>> AMEN to all your statements! Mis-diagnosis is a serious problem >>> with all Neuro conditions! I fought for five years and went through 28 doctors before my wife was accurately diagnosed! >>> >>> Don Summers >>> [log in to unmask] >>>