As most of you know, I have aggressively treated my Parkinson's - even having experimental brain surgery years ago - where dopamine-producing retinal cells were implanted in my putamine unilaterally (one side of brain).

I was in Phase I, the safety phase, of this trial where 6 volunteers went into the study knowing they were getting the real thing. There were ups and downs, but after 48 months there was nearly a 50% improvement over baseline symptoms for participants.

Phase II (72 participants) received bilateral transplantation and after 12 months, the trial was halted because the Phase II participants did not meet endpoints. That was in July, 2008. It has been nearly 11 years post-op for me, and over the past 6-8 months, I have bad dyskinesia with dystonic-like pain.

But I have discovered something - I can almost say with 90% conviction that the dyskinesia is NOT resulting side effects of the medications I take. Why do I say that? Because after having PD for nearly 18 years, my medication regime is this:
L-dopa: 6 to 7 tablets of 25/100 Sinemet; one every 3-4 hours
Agonist - 4 Requip (2 mg) with the first 4 dosages of Sinemet
COMT inhibitor - Comtan - 1 200 mg tablet taken with first 3 daily dosages of Sinemet/agonist
1 MAO Inhibitor 5 mg Selegeline tablet taken with morning dosage

I take a small amount of dopamine in comparison to Rick, and still have dyskinesia. I get worse dyskinetically about 30 min. after taking meds. and now I am beginning to get more dyskenetic when end of dose is near!

I say all of this to say that in my case, and possibly some of you are doing likewise, with the advancing of the disease itself the cause of dyskinesia, and NOT a side effect of the meds. Remember, I only had the dopamine-producing cells implanted on one side of my brain.

And in response to Atme's reply, YES - I am convinced that this disease has everything to do with an autoimmune disorder! I have had hypoglycemia dx years ago, and had an overactive thyroid removed about 40 years ago. I have also been dx with fibromyalgia and osteoarthritis. My pain may be more age-related than disease-related.

I SAY ALL OF THIS TO ASK THOSE OF YOU EXPERIMENTING WITH MEDS TO HEED THESE POSSIBLE WARNINGS:

1) DYSKINESIA MAY NOT BE A MEASURE OF THE EFFICACY OF YOUR DOPAMINE LEVELS - it could be a symptom of advancing PD
2) YOU MAY HAVE AUTOIMMUNE INVOLVEMENT ALONG WITH PD, SO BE CAREFUL ABOUT CHANGES in DOSAGES AND SCHEDULES
3) YOUR DIET , GENETIC MAKE-UP, MENTAL STATUS AKA MOOD, AND/OR ACTIVITY LEVELS PLAY A HUGE ROLE IN YOUR SYMPTOMS.
4) THERE IS A MINIMUM 2-WEEK WASHOUT TIME FOR SINEMET, AND MORE LIKE A MONTH FOR THE MAO-I. COMTAN SHOULD NOT BE ABRUPTLY HALTED AND CAN DAMAGE YOUR HEART.

BOTTOM LINE - BE CAREFUL WHEN SWITCHING MEDS AND DOSING TIMES AND ADDING SUPPLEMENTS - WE ARE ALL VERY DIFFERENT

Peggy