Thread: Mysteries of PD (re)Diagnosis: Tongue Wagging and Chemical Camouflage....
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Old 09-30-2009, 08:38 AM
daffodil daffodil is offline
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Join Date: Sep 2009
Posts: 5
10 yr Member
daffodil daffodil is offline
New Member
 
Join Date: Sep 2009
Posts: 5
10 yr Member
Default re-diagnosing and tongue wagging
i moved 6 years ago and in the process of looking for a new neurologist met one who said he didn't think i had parkinsons and wanted to see me off of all meds. (i had had pd 9 or 10 yrs at that point and was taking sinemet and mirapex) i began tapering off meds and became extremely rigid, to the extent that i could only lie of the floor. the dr meanwhile went to europe for 3 weeks. we tried and tried to get hold of him and finally emailed him. he said i should go to the hospital and that i should start taking my meds again. as soon as i took my sinemet things got better. fortunately for him, this doc decided to concentrate on research.
the moving of the tongue side to side is a way to measure tremor.

Quote:
Originally Posted by Conductor71 View Post
I visited today with a potential new MDS. Upon examining me, he concluded that he could not definitively diagnose me with PD and begin treating me based on what he observed. It was a given that I was "on" with Sinemet, and I completely understand where he is coming from given that I was asking him to treat me based on someone else's diagnosis. He noted that even in an "on" state with the mega-doses of Sinemet that I take, he expected to see more definitive signs of PD. He wants me to come back in for testing when I'm drug free for 12 hours- this should be oodles of fun.

I'm a little stunned by this but also respect the wish to essentially re-diagnose me. Of course, I have many questions and hope you will chime in with what you think or your experiences and knowledge!

- Anyone have a similar experience in being re-diagnosed?

- Were many of you tested for Wilson's Disease?

- Have any of you been asked to move your tongue from side to side as fast as possible in a neurological examination? This was new to me and I've never had it done as a PD test. Anyone know why this test is done?

-How many of your neurologists are open to you using herbal supplements?

-Is it the norm for neuros to be reluctant toward prescribing off-label drugs that may be therapeutic in PD?

Laura

Thanks to Greg W. for one of his brilliant PD bon mots "chemical camouflage". He's also responsible for the beaut "clognition".
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