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I'm so thankful not to be spending time laying on the floor in a puddle of my own drool because I can't move
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especially since my MG is not considered severe
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All I can say is : Ha?! not considered severe by whom?
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but am extremely tired and frustrated (and angry at times) with the ups and downs associated with it. For me, the better I feel one day, the worse I expect to feel within the next few days when taking Mestinon...I'd prefer a steady middle ground
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Completely normal to feel that way. The hardest thing about MG is it's total unpredictability. Or as my neurologist calls it "a crazy disease".
I had the same kind of response to mestinon, and that is why I stopped taking it. The crazy fluctuations of this illness were enough without adding the mestinon fluctuations on top of it, mostly that it also became less and less effective with time. My neurologist now suggested trying a low dose of mytelase (another acetyl-choline esterase inhibitor, with a some what different mode of action) that I have been taking for the last two weeks and so far seems to have less of this effect. (but as you know too early to be sure).
I am also take long acting ventolin (vospire) , which has a somewhat similar mode of action to astaragulus and their side effect profile is better known. It was another one of my neurologist's brilliant ideas-to give me cough syrup (which contains a small dose of ephedrine) when I crash. Although, when I tried to take it on a regular basis it made my symptoms much less stable. (which just shows you what a crazy disease this is!)
I have reached the conclusion that it is a fine art to figure out and adjust the optimal treatment for this disease, and very few modern world neurologist have the time, experience knowledge and patience to do this. It is so much easier to blame it on your "emotional problems" or "lack of effort" or....
I don't think there is currently a cure for MG, but there are many things that can help in making it less disabling and less severe. Also, in my opinion using experimental treatment is justified (in any disease) whenever commonly used treatments are not effective or not tolerated due to severe side-effects. preferably with the supervision and guidance of a physician who has knowledge and experience in this disease.