Vicky,

You are right. Dopamine Dysregulation Syndrome doesn't at all explain my Parkinsonian symptoms. I think rather what they are saying is that the syndrome can in fact make it look like I progressed when it is just the drugs. They haven't even ventured a guess other than psychogenic which mean they don't have a clue. They said as much. The doctor pointed out that there are many things that look like PD, but based on what they saw and heard of my symptoms and history it was not PD.

I asked the doctor point blank how she could reach that conclusion given that I am asymptomatic on meds. I thought this crazy because off meds I look like I have PD. Here is what they considered in their assessment:

My major symptoms emerged parallel to times of acute, intense stress. My tremor became prominent during my divorce and freezing coincided with workplace harassmebnt and sudden job loss. Still, this doesn't address why I developed bradykinesia in the first place, but rigidity barely registers for me and balance has never been an issue.

I never had a robust response to an agonist or any response to Azilect. I never had a honeymoon period with levodopa despite my incredible response to it. After 7 years of being on levodopa, my response has not waned. I still take 25/100 per dose despite what looks like progression. I never responded to an early trial with Amantadine, and the Neupro patch did nothing other than give me a drunken gait. My tremor still responds to alcohol and propanalol.

The biggest factor is that I show absolitely no clinical sign of PD when medicated. I was told by my local doc that this is quite rare and he had seen it in only one other PD patient. The NIH doctors see this as evidence that I do not have PD. They said that there is always some sort of breakthrough sign; especially, in a person who is 6 years into diagnosis.

Sorry rather long, detailed, and self-absorbed but just hoping this may be somehow helpful to others.

Laura