Alice thanks for your thoughts on this. It does lend me some hope. My doctor has stated my MG is generalized (not sure what that is). All I want to do is be able to see normal again. The part that bothers me is "caution and supervision". My wonderful wife of 50 years watches over me like a "momma bear" but she is not a doctor. She goes in with me to ALL my doctors visits and spends hours on the Internet researching this maddening disease. My doctor or nurse is very slow responding to our calls, which really concerns me.
Thanks again,
Mike
Quote:
Originally Posted by alice md
Annie,
it's true that both neostigmine and mestinon are AchE inhibitors, but they do have a somewhat different pharmoacology and mode of action. During my first crisis, the very smart head of ICU that took care of me, gave me IV neostigmine on top of the mestinon, not only to see if I was in a myasthenic vs. cholinergic crisis, but also as he saw the dramatic response I had to it, as an SOS when I started having more severe respiratory symptoms. Thanks to that I was only on the verge of being intubated.
when I was back on the general ward, I had to fight with the neuroloigst (who thought it was not required, and "couldn't" work better then mestinon) to keep on receiving it. The combination of mestinon and injections of neostigmine (which I thought of when I was doing extremely poorly, and pretty much forced my neurologist to recomend) again helped me significantly, a few years later, when my condition significantly deteriorated.
So, I think it is not a bad idea to try this combination as long as it is done with caution and supervision. But, I agree with you that most patients will require some immunomodulating treatment, and there are studies that suggest that it may avoid OMG from becoming generalised.
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