Quote:
Originally Posted by marciaj
I only saw a neuro once in 2006 and he diagnosed PD but it wasn't advanced very much so didn't start me on meds. I got worse in 5 years and went to see a MDS here in another state and he says it's either corticobasal degeneration or Wilson's disease. He's running a blood test to rule out Wilson's and a MRI to rule out small strokes. I'm shocked. Not expecting that. I'm on the wrong message board! Sorry. Thought I'd let others know.
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Marcia,
Please reconsider staying with us a while longer; it seems premature. Don't forget there is a rather high diagnostic error rate with movement disorders. I would ask a lot of questions like what symptoms make him think CBD versus Parkinsonism. I don't know that it sounds unreasonable to need meds after a five year diagnosis of PD. I took that long for essential tremor to look/become more Parkinsonian.
I think that I would ask for any further testing possibe before accepting clinical observation. I think PET scans may be helpful but not sure -doesn't hurt to ask.
See Harley's recent post on having a DatScan. She has lived for the last 27 years thinking she had PD when "nope" turns out she has secondary Parkinsonism which shows loss of dopamine but not progressive loss.
Please keep us updated.
Laura