I have mixed feelings when I hear doctors say to come in off meds.This means full dystonia for me and it inflicts suffering upon us. Even danger. If he wants to see you off, let him make you comfortable somewhere in his building/location where you can wait till you go off. OR videotape it and take it in. Perhaps your symptoms allow you to still do this but it bothers me that he is asking for great suffering on your part. i know others who have been asked the same thing. Have you ever had reason to doubt your diagnosis?
Transporting or traveling while off is potentially dangerous in several ways.
My doctor only mentioned curcumin as a possibility.
paula
forgot to answer a few questions. i have not had to show a tongue wag, but was tested for wilson's disease, which showed borderline high copper but not the rings [forget their names] that you have to go to the opthamologist to be tested for. The doctor said he wasn't concerned about the almost too high copper, said someone may not have washed the container well enough. Are all of our illusions of trust in confidence and safety going to be shattered? geez
Quote:
Originally Posted by Conductor71
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 neurologist but also respect his 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?
I am beginning to feel like there are no neurologists out there who don't fall in line with the current mode of flow chart medicine. Patient presents with tremor, follow the lines and arrows which lead to drug A, B, or C, off to the pharmacy I go. So hate that the pharmacist knows me by name.
I am also realizing in my bones just how limited our treatment choices are. A) Sinemet and dyskinesia or B) Agonists and ?????. It's the unknown that scares me with agonists, yet all neuros seem to want to place us there to begin our lifelong courtship with PD drugs.
Does anyone have a neuro who really thinks holistically or innovatively toward treatment? I am getting that practicing medicine is really about conformity to whatever is established as sound research- we all know how flawed the research model is, yet here we have practitioners using it as a standard measure for therapies or treatment. This makes no sense to me.
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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