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Rayilyn -- Where do you live? The other Carole -----Original Message----- From: Rayilyn Brown <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Monday, November 11, 2002 2:09 PM Subject: Re: PWP not ON/CaroleRN suggestions >HI, Carole, > >Requip in miniscule doses gave me psychotic nightmares, no kidding, worse >than my usual bad dreams. Mirapex in the go low, go slow approach put me to >sleep. > >Dr. S at Loma Linda mentioned Permax, but decided against it and frankly I am >not enthused about these meds. Artane made the room spin and I felt really >weird. He also talked about Amantadine. I've also tried Comtan. > >The Sinemet 25/100, reg I'm on now, not CR 50/200 I took over a year ago, >doesn't seem to help much either. and still makes my dystonia worse if I take >too much. Sinemet doesn't make me mentally weirder than I already am. > >Everyone seems to think I should be able to get some help However, I can' t >get to these neuros hours away on deadly fwys. My dog doesn't drive. Also, I >don't have someone to pick me up if the reaction is bad at home. > >I"m very tired of bad reactions, and as I have told people many times >....."I've been there, done that" with cancer meds and allergic reactions, >some very severe. > >As my primary doc said "I'm between a rock and a hard place' and no, I >really don't want brain surgery(supposedly DBS is not encouraged if you don't >respond well to Sinemet). So, I'm just hanging on, hoping some new med or >non-invasive treatment arrives, but I don't think that will be happening soon. > >It would make me and everyone else happier if I could get at least a partial >solutiion, so I do appreciate your concern and caring. It is good to be on >the List where people are ahead of the medical profession, at least in my >area of the country. UCLA is probably my best bet, but I moved from Westwood >in 1968. and it's too far away. > >Thanks so much, Ray > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: mailto:[log in to unmask] >In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn