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Mestinon 60mg acting as a placebo?
After being treated for Myasthenia Gravis with Mestinon 60mg to good effect, I was informed that I don't have MG and that they 'believe' and 'think' that I have a Functional Neurological Disorder.
I was told that Mestinon was having a placebo effect on my symptoms which, quite frankly I don't understand both because Mestinon is very time specific in the way it works, and because I suffer from gastrointestinal issues side effects when I take them.
Has anyone else here had a similar experience? To be clear I am not taking a placebo pill, I am taking the active ingredient medication.
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Was the Myasthenia Gravis diagnosed by acetylcholine receptor test? My first treatment was Mestinon and it worked well at first. Four 60mg pills a day were my limit before GI issues would start. My MG got much worse. 9 hospital admissions, 5 in ICU. Treated with 1000mg daily pulse dose steriods, Retuximab, IVIG, Solaris, 60mg Prednisone , Plasma Exchange. I could hardly hold a fork and was ready for Hospice. I am 78y/o and a 100% disabled vet before the MG. My Doctor was not keen on the idea because of increased chance for infection but he did put me on Vyvgart. Within a week I was back working in my Restoration Shop working full time hours. Still take Mestinon every 2-1/2 hours when working.
I had a very similar experience. I was diagnosed with MG a number of years ago, recently I was at Mayo and received a diagnosis of Functional Neurological Disorder. When I first got the MG diagnosis, I was put on Mestinon and it certainly seemed to help, but eventually it was clear that it was doing nothing, and the initial seeming benefit was placebo effect. I also responded very well to Prednisone, which seemed to confirm the diagnosis of MG. Over time it became more obvious I didn't have MG, and now I have a new diagnosis which I believe is correct.