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PARKINSN  January 1997, Week 4

PARKINSN January 1997, Week 4

Subject:

Re: doc's ignorance

From:

Norma Messer <[log in to unmask]>

Reply-To:

PARKINSN: Parkinson's Disease - Information Exchange Network

Date:

Sat, 25 Jan 1997 04:30:59 -0500

Content-Type:

text/plain

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text/plain (25 lines)

John,

In response to your query re: my experience following misdiagnosis (I was
told by a general neurologist that I had dystonia) - I responded immediately
to a very minimal amount of Sinemet, in conjunction with Artane, but every
week or ten days the amount had to be increased and the interval between
doses decreased to get the same effect, so she would increase the Sinemet. I
began to have really BAD dyskinesias, and I suggested that perhaps it was too
MUCH Sinemet, not too little, that I was taking, but she said instead that it
was the progression of the disease. Ironically, I was "presented" as a
dystonia patient at a conference at the hospital where she was on staff -- I
shudder to think what all those med students came away with! I was
exhausted all the time, lost a lot of weight, and just never felt well. I
barely had the energy to go to work, come home, and go to bed.

When I finally went to see a movement disorder specialist and was
re-diagnosed, this time correctly, he took me off all meds for a few days
(which was terrible), and then, for a year, has been very gradually
fine-tuning them. I take a third of the Sinemet I was taking before (now 3-4
halves of Sinemet CR 50/200 daily, and 9 .25mg permax. I can only thank the
powers that be that I connected with a terrific MD and am doing so well now.
 (Those powers include him, myself, my supportive family and friends, and the
people on this list!!!

Norma

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