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johnnys

md protocol

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Ive seen several doctors now for three years.They all prescribed sinemet without mentioning other drugs that might be better at this early diagnosis.

I have mentioned other drugs during my visits and also take requip for sleep.

I always thought it was the responsablilty of the physician to come up with all options for care.I heard recently about selegillne being very good.

These options should be put before the patient by the physician,not by having the patient do the doctor's job.

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My Dh was on selegiline for years as the only rx, and it worked really well, it was suggested because he was young and his MDs wanted to delay starting carv/levo if at all possible.  That being said his first neuro wanted to start him right away on carb/levo.  We moved on to a second neuro who put him on Mirapex.  We did try that and that made his tremors worse, I had his PCP take him off and then moved on to a first rate movement disorder center, where after a complete exam and testing he was started on the selegiline.  I agree with you in that most neuros end up telling you what to take, and not having you as a partner in your own care.  I know that all PWP are different, but I believe the best we can do is try and if not happy move on.  Over all these longs years I believe that movement disorders centers may be the best, but then I'm sure there are terrible stories in some of them too. We educated ourselves and take the information with us, and make the suggestions to at least try.  Personally I've learned no one knows the PWP better than the PWP and the caregiver, spouse, friend etc etc etc.  Take charge and boy I'd give the selegiline a try, and really if it doesn't work, what did you loose?  If it does work look what you've gained and maybe even taught the MD a thing or two.

So sorry you're having to go through the frustration.  Hang in there and good luck.

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