Quote:
Originally Posted by Conductor71
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
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The MDS did say why he thought it wasn't PD. He did a lot of office tests and said there was no test for PD. He did say CBD is Parkinsonism. I still need more tests before he narrows it down. He didn't seem to know about DatScan. I didn't quiz him about it because they aren't available here anyway. I've learned a lot from others on these discussion boards. It seems these 'ism' diseases are similar but not the same. I thought I was classic PD. Just goes to show "just when you think you know it all" ... just kidding, I never knew it all but didn't think I'd have to start over either. It's a little chilling because now I don't have a road map.
Thanks Laura, I'll keep you updated.
marcia