Quote:
Originally Posted by juliejayne
I would be interested too. I don't even have a seronegative diagnosis. But I managed to talk my GP into trialling Mestinon over a year ago.
When I started at 30mg, and the effect was VERY positive, I thought I was cured, sort of.
However I have now had to increase that to a much much higher level and although the effect is still positive, it is not keeping up with the progression of the disease (whatever it is that I have) and I am concerned that I shall be hitting the upper limits of Mestinon, even before I get a confirmed diagnosis.
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I was in the hospital for the 2nd time in Jan this year. The resident Nuro kicked my Mestinon up to 12 x 60 a day, plus 1 timespan at night. I will admit, now, 2 months later, I'm doing ok. I thought I was above the limit. No real problems except some gastro upset. It is tolerable.
I don't know the upper limits either. I have generalized MG.
FREDH