Madelyn,

The new doctor wants to screen for Wilson's Disease as I've never had it done. Is it standard to have this screening before a definitive PD diagnosis?

this leads to Paula...I didn't really doubt my PD diagnosis until now because my original dream team never screened me for Wilson's Disease despite an atypical presentation of first what was thought to be ET. This original neuro also thinks it's okay for me to be on a lot of Sinemet and has not one concern over long term repercussions.

I didn't really go for a second opinion, but I guess I can understand why he needs to reassess me in a more "natural" state. I'm not sure, like you said, I can't just do it between med dosages as levodopa has such a short half-life. He was very considerate in asking me to do this- I would get an 8 am appointment and take meds immediately after exam. I also think that missing a Mirapex dosage will skew the exam as this has made my off time worse.

I am just afraid he will "stage" me and I'm not sure I want this info. As for travel, I plan to have a family member drive me- I never get behind the wheel when "off" meds.

I wonder why, given that my symptoms have befuddled (another) neurologist with PD expertise and affiliation with a major research university, they are still so reluctant to prescribe PET scans as further confirmation? It's funny that we have so much technology but still have made almost no advancement in diagnoses. How different is this from being observed by the famed Dr. Parkinson himself or Charcot? In the end, the docs are still just observing, taking notes, and disagreeing. More dithering. I cold seriously see seven neuros and get seven different opinions. It's ridiculous. At this point, I just want someone who will work out a better treatment plan.

Laura