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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-07-2012, 04:37 PM | #31 | |||
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You might talk to your neurologist about doing a Mestinon trial - that can (in most cases) rule MG in or out pretty quickly. However, there are some forms of MG that don't respond to Mestinon, so it's not a foolproof "test".
People with MG are some of the only ones who are able to handle even a small dosage of Mestinon. That's how I got "diagnosed" - all of the other tests came back negative, but I was able to tolerate 90 mg of Mestinon with no problem (120 mg put me on the couch in misery for a couple of hours) - most people can't tolerate 30 mg.... |
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03-12-2012, 02:24 PM | #32 | |||
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That is very interesting--I'd not hard that before
I'm still on the diagnostic fence (MS or MG or residual cervical cord compression), but the 1 medicine I can't do without is Mestinon---I have problem swallowing thin liquids and mestinon seems to help I just have intermittent penetration and likely chronic aspiration (evidenced by my frequent left sided lung infections) and taking the mestinon (60 mg every 4-6 hrs) seems to help I've decided if it a placebo effect, I'm good with that b/c I don't get side effects (although things get loose if I bump it to 90mg) I think neurologist's have to much fun putting people into boxes (diagnostic categories) and should focus more on actually helping people Whatever the "answer" to you problems, just remember you are not alone |
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