kookaburra

I’m currently seeing movement disorder specialist Dr. Stephen Reich about a neurological illness that has been plaguing/puzzling me since it surfaced in late 2003. At first it was a bizarre crawling sensation that literally happened over night and in full force. It varied from day to day - sometimes unbearable, at other times minimal. In early 2004 tremors came, followed a slight loss in balance and a strange new walk. My first thoughts were Parkinson’s, but none of my tests were showing any evidence of this. I have seen Dr. Reich twice, once in May and recently this month. During the first appointment he assured me that I do not have PD because I don’t have rigidity/stiffness in my body. I can move around just fine - but it’s awkward. I have body tremors and my cardiovascular system has gotten very weak. I have annoying twitches in my legs as well. During the second appointment, he told me that I might have Wilsons Disease.

If you aren’t familiar with Wilson’s Disease, it is an illness derived from a copper toxicity that affects about 1 in 30,000 people. People with WD can’t excrete copper so it builds up in their body tissue. It can take on severe neurological symptoms in some cases which look similar to Parkinson’s Disease. It can also damage the liver and kidneys. I’m going to be starting my 24 hour urine collection tomorrow, but I already feel that I’m afflicted with this. When I stopped taking my multivitamins I noticed that I felt “better” than before - and those vitamins contain 2mg of copper in each capsule! Also, I have a few strange small marks on the whites of my eyes which are indicative of WD.

What I’m most worried about is my hypothetical recovery... how much I will salvage, etc. I started to “lose” my mind last year and now I can barely hold a conversation. My memory has gotten pretty bad and I get confused at times. I’ve also gotten really depressed and lack motivation. I work at a university and have been stigmatized - it’s a pain just being here around others sometimes. Since the symptoms seem dead on (even the onset age: I was 22 when this started), I’m hoping that this is Wilson’s and that I can successfully treat it. The worst part is not knowing what the hell is happening to you and why.

Is anyone here on the boards familiar with this? Anyone here have this? Or what about your family members? It’s a hereditary illness. Any helpful information/advice is much appreciated.