[rd42]

At the urging of family and friends I'm going to the Mayo clinic in MN tomorrow. My hopes are not up, but I was interested in any pointers or advice from my ultimate PD resource... the people in this forum. I don't want to drive over 2,000 miles to snap my fingers and walk up and down a hallway only to turn around a go home. Then again, what can they actually do? PD diagnosis is 70-80% accurate and diagnosed by taking l-dopa a noting the response. I was diagnosed at 30 with no family history of PD or tremor whatsoever on either side of my family 3 generations back.

Thank you for your responses,
Robert

[Conductor71]

Wow, good for you. I am actually considering a consult elsewhere as I have some strange things going on with a blend of ET and PD symptoms.

I'm afraid I can't offer much advise but since you'll be in the hands of the Cream of the Crop, I have many pain in the rear kinds of "If so, why" kinds of questions based on the vaguely scientific and inaccurate diagnostic process we endure. That is after diagnosis, we still aren't sure we know what is going on.

Like, why are PET scans routinely used in Europe for diagnosis, but not here given the 30% diagnostic error rate? Yeesh, and they even have had "inferior" government run health care in Europe for years now...

Then, start narrowing down with the next best diagnostic tool in our arsenal- the gold standard levodopa challenge. lol. Refer back to question one on PET scans and ask why no one has seen fit to give you a more definitive diagnostic test.

I would also bring up absolutely any atypical PD stuff you have going on. Think of biomarkers...can you still smell, do you have REM sleep disorder or act out dreams, etc. If you don't present with any of these potential biomarkers, I would then demand a PET scan and SNAP your fingers at the same time

Oh, and for me, please ask where we learn about participation in research on tremor? I would like to become more involved there but have yet to find any good sites just on tremor - I don't want to try drugs to control it, just want to get involved in helping learn some things for all of us.

Please follow up and let us know how it goes. I'll be sending some positive shaky spice girl vibes your way!

Laura

[jeanb]

OK this is just what I have heard from reliable sources...

... the Mayo clinic is fine if you are 70+ years old

... not good if you are younger (young onsets should stay away)

... they avoid use of agonists and go straight to sinemet/ldopa

... they focus on prescribing sinemet/ldopa at the doses that make you feel as good as you can NOW, with no thought of consequences for the future (e.g. dyskinesias)

[rd42]

One day in at Mayo and all I have to show is that I have PD tremors and non-PD tremors, it's might not be PD, probably not PD Plus, and the Dr agrees PD should be PS, or Parkinson's syndrome. Tell me something I don't already know.

I mentioned the dopamine agonist question to the MDS at Mayo and he said that it is true they rarely prescribe them. They have had to many tragedies with gambling and sex addictions.

It's not that I think agonists should not be a treatment option, I just think a patient taking them should be closely monitored in the beginning. For me, taking requip was like stepping into a psychedelic movie. I phrased things differently, the sun light sparkled more intensely, my personality was different... it may have been tolerable (even fun) if I didn't have to work. I also think that doctors should be more clear when saying it "might be neuro-protective" because the patient rarely hears the "might" part. It's misleading. I've watched more than one person taking agonists make choices that have devastating repercussions. Then again, I've seen people do that after a couple of beers.

[rd42]

Like, why are PET scans routinely used in Europe for diagnosis, but not here given the 30% diagnostic error rate? Yeesh, and they even have had "inferior" government run health care in Europe for years now...

Laura, I asked about the PET scan and he said since amphetamines are used to stimulated the production of dopamine, the FDA hasn't yet approved it for anything other than research in the US. Ridiculous.

[jeanb]

Rd42 --

Another option is Dr. Camella at Rush - she comes highly recommended!

jean

[rd42]

Thanks for the name Jeanb. I'm not really sure what I will do after Mayo. Keep on keepin on. Shaken not stirred. I wonder what disease would be stirred if PD is shaken? That would suck to constantly be stirring things, unless you worked at a bakery, I guess then it would be a employable skill.
:P