Xa,

Your first Neuro like mine was hell bet and determined it wasn't PD. He kept telling me it was focal dystonia (because I play the piano). My primary care doctor even noticed the cogwheeling in my left arm and some tremor, but neuro #1 was convinced it was focal dystonia. I kept getting the dystonia in my feet in the early hours in the morning and when I was very stressed, but he said it was dystonia.

After some convincing I had to do, he let me trial some sinemet, and the difference was like night and day. I was no longer breaking molars from clenching my jaw, my hands uncurled and my dystonia my my feet let up. My left arm unfroze so the arm swing is better; my right side still isn't as good. He didn't say anything and put me on Mirapex in addition to the sinemet. The Mirapex was no bargain and made me very ill. I became narcoleptic on it and fell asleep at my computer during an online class I was taking.

The thing is, I was in my mid 40s when I finally saw the neuro, but I had been off and on symptomatic for years. I blamed it on other things like a low car. It's difficult for me to get out of my 2001 Toyota Celica because it rides quite low to the ground. I had trouble walking and had lots of cramps and stiffness. Heck I was bike riding a lot, had corrective surgery on my right foot, and did a lot of lifting as a computer technician. Finally when the cramps started impacting more an more, and my right hand developed a tremor did I bother seeing my doctor about it.

Anyway after a mixed up report, I ended up at the Lahey Clinic with a new neuro. She had me go off the old medication schedule and started her own. I was put on mostly sinemet 3 times a day with the CR version at night. Eventually Amantadine was added and now Lodosyn along with more sinemet.

Now at this point I can actually get out of my car pretty easily, I can play the piano again, which became very difficult physically and emotionally to do, and I now have days when I feel totally 100% symptom free like I never had the syndrome.

What can I say? Each doctor as Laura says has their own approach to the disease/condition/syndrome, whatever you want to call it. This is designer disease as they say because each individual handles this differently. Unlike the flu bug, or broken bones, or other conditions where a set routine fixes the problem, this condition does not work this way. This is what makes it so difficult and elusive for the medical community to nail down with a cure. Every tine they come up with something that they think works, the condition changes on their test subjects. This moving target makes it difficult to report any final results and come to any set conclusions.

Anyway, before taking what your doctor tells you at face value, discuss these points with him. This I found to be the most important aspect of treatment. I learned the hard way with neuro #1. You need to ask questions, don't be afraid to suggest things, and be upfront and honest. Believe me if something doesn't feel right, tell him. Don't hold it back because you feel foolish. As my nana used to say. "You have a tongue in your head, use it". It doesn't hurt to ask. What's the worse thing that'll happen? An infamous "no" for an answer.

You, as I've discovered and eluded to above, have to be your own advocate. For me the sinemet proved to be the godsend it was supposed to be. Unfortunately for others it does not as Paula pointed out. Perhaps in her case, her neuro waited too long. There are some "new" studies saying that it isn't the sinemet that causes the dyskinesia, but the condition its self as it pogresses. Again do they really know?

John