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Old 06-12-2010, 11:51 AM
Jaye Jaye is offline
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Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Default Oh, yeah...

The same thing, more or less, happened to me. On May 6, 2009. I'm sorry I can't reply in depth right now (I'm traveling).

Doc would NOT listen to how I'd progressed, just kept telling me to reduce drugs. Reason given: if I'd had PD dxed for 11 years, I'd have been brought in in a wheel chair after being off meds for 12 hours. He wanted 24 "so he could see me 'off,'" but I refused. He found cogwheeling in my arms, insulted me several times, and told me he diagnosed PD but I was still to reduce meds (originally he had ordered me off ALL meds over the PHONE).*

It took me several months to get back on an even keel. Then my NEW neuro's receptionist told me to come in for my first appt in a 12-hours-off state, and I was tired of fighting it so I complied. It has taken me months to recover from that, and it turned out new neuro didn't want me "off," but "on" for a first visit. New neuro DID also find cogwheeling and other signs on exam. then had me take a dose of Sinemet and wait 15 minutes. Guess what---no cogwheeling after only 15 min on the drug.

The neuro I fired said I must have a rare familial kind that's mild.

I think I've followed many tips and advice from my reading and from my friends here, and have kept side effects down to a minimum. Of course being thrown off drugs twice has left its tracks.

I didn't think it could happen to me, Alice Braithwaite Goodyshoes, but I was like a deer in the headlights (there's more to the story). I had seen former neuro for FIVE YEARS, and we had built up some trust going both ways, I thought.

I was so wrong. (Are you reading, Michael?)

The lesson is this: we don't work for them. They work for us. We pay them for consultations but our bodies are our own. Don't let them bully you. Go to another doc ASAP, and keep doing it until you find one you can work with. I have been giving this exact same advice here for years and years, and yet when it happened to me, I couldn't believe it. It happens to lots of people, no exceptions for trying hard to take care of yourself.

Good luck, sincerely, madamlash (scary name!). Welcome to NeuroTalk.

Jaye

* Somebody please explain about neuroleptic malignant syndrome. Six weeks seems like too sudden to me, but I'm no doc.
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rose of his heart (06-14-2010)