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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
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