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Jim I'm not on ANY PD drugs and haven't taken any since I tried Stalevo and Comtran again after my DBS almost 5 years ago. S and C didn't help and gave me abdominal dyskinesias or twitching. The most noticeable thing about DBS is the tremor control, which no drug ever accomplished. I seem to have "plateaued" at where I was in 2003 re micrographia, ability to walk, etc. My voice got worse though. Also I don't have dystonia anymore, but sometimes have leg cramps in bed. When my tremors became bilateral in 2003 I decided to try DBS. They were the symptom that bothered me the most. From what I've heard, DBS seems most effective in PD tremor control, including essential or familial tremor too. Usually, PWP without tremor don't go for DBS. DBS did not help all my symptoms, but except for voice, I have not gotten worse. My neuro thinks my flexibility is pretty good. It is difficult to tell what I would be like if I had never had it done. The thing that makes this so difficult, is that everyone with PD responds differently to drugs and this surgery. This is why I worry about a one size fits all "cure". Good luck. Ray Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ----- Original Message ----- From: "Jim Medlin" <[log in to unmask]> To: <[log in to unmask]> Sent: Monday, February 04, 2008 5:18 AM Subject: Re: dopamine, when to start treatment > Ray, > > You said that the common PD drugs did not work for you but DBS did. > I am considering DBS now because the Stalevo and Mirapex I'm on is > having less positive effect and more negative. I was wondering if you > are on any kind of PD meds, what they are, and what effects or > side-effects > they may have. > > Thx, > > JM > > > > maybe Sinemet does not work for these people. After my first dose I > thought, this is great!! But unfortunately it never helped again, nor did > Comtan, Stalevo, agonists like Mirapex, Requip, etc. DBS was the only > thing > that helped me, but I would certainly take PD meds if they helped. This > is > weird, I know, but true. > > Ray > > Rayilyn Brown > Board Member AZNPF > Arizona Chapter National Parkinson's Foundation > [log in to unmask] > > -=-=- > ... Does it bother you that doctors call what they do a practice? > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > > -- > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.19/1258 - Release Date: 2/4/2008 > 10:10 AM > > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn