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Rach, It occurs to me that if anyone is going to be labeled with "fraud," it would be your neurologists.
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I fully agree with that.
regarding mestinon. There are other ACE inhibitors such as neostigmine and mytelase. Why not try one of them?
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As far as that BS Tensilon test you had . . .
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It was not a useless test at all, as it was the first clue to the diagnosis of autoimmune problems.
Many times physicians use supposedly inert substances as "placebo" without realizing that those substances are not inert at all.
Ptosis that responds to atropine is a huge clue to an autonomic problem, even if it is not an official test.
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Seriously, what's the deal in England? I've heard so many bad medical stories from there. Not that we don't have our share here.
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Unfortunately, patients that have complex and "out of the box" medical problems get pretty horrible care everywhere around the globe.
In fact the more I look at it I come to the conclusion that most physicians really want to take care of patients with easy (but not too easy and "boring") to diagnose disease (preferably something they can brilliantly diagnose) which respond well to commonly used treatments, without too many side effects (or at least no ones they will complain too much about).
Patients can have "some" emotional response to their illness, but they better not bother their physicians with it too much. They should mostly make their physicians feel good about themselves, their brilliant diagnostic skills, their compassion and dedication. (And they better not put any of this to a real test).
Placebo=to please= the patient has to please the physician and not as was wrongly thought in the past, the other way around.