Dr. Vestal,
Thank goodness we have a pathologist as a contributor! I have read your posts before and you have a lot of credibility.
I am not speculating on my diagnosis...I was diagnosed by a very competent neurologist at Mount Auburn Hospital in Cambridge, MA. As soon as my low ceruloplasmin level came back, I was sent to see the ophthalmologist at Mount Auburn. K-F rings were present - he told me this within the first ten seconds of the eye exam.
I already had a Wilson's algorithm published by the Mayo Clinic. When the K-F rings were observed, I immediately diagnosed myself with Wilson's Disease. I didn't wait for my neurologist to contact me. But shortly thereafter he did. I was the first Wilson's patient he had diagnosed in his entire career.
My Wilson's diagnosis was accidental...please read on. My neurologist could not explain my foot tremor. But I could.
I am convinced my foot tremor is a drug side effect. The drug is Vyvanse 60 mg. Vyvanse is an amphetamine pro-drug used for ADHD and off-label uses like depression. It can't be abused, even by someone like me (a scientist with 35 years experience in pharmaceuticals). I don't have ADHD but have been depressed for many years. I wonder if my depression was caused by my Wilson's. My doctor wouldn't continue to prescribe my Vyvanse unless I had the foot tremor evaluated.
You will find this interesting...the foot tremor is predictable. It usually begins about 8 hours after I take the Vyvanse. The onset coincides with peak therapeutic effect. I don't wake up with the tremor or go to sleep with it. It's not bilateral, which is proof that I'm not symmetrical (no human is). The tremor looks a lot like tardive dyskinesia (TD). I have seen TD in a family member who took Prolixin (fluphenazine) oral and IM (depot) for many years.
This is my explanation for the tremor. My tremor confounded both my doctor and my neurologist. Neurologically I was perfect (brain MRI, physical exam). So my neurologist decided to check ceruloplasmin and it came in low...twice! I got lucky for sure.
I now take Syprine (500 mg x 2) and Galzin (25 mg x 2) each day. I began in May 2016. My Wilson's-related psych symptoms have greatly improved. But guess what? I still have my foot tremor.
More to follow.
Space Oddity