Re: PWP not ON/CaroleRN suggestions

[Rayilyn Brown <RayilynLee@xxxxxxx>]

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

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