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Old 04-02-2016, 11:46 AM
FREDH FREDH is offline
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Join Date: Jul 2012
Location: San Antonio, Tx
Posts: 140
10 yr Member
FREDH FREDH is offline
Member
 
Join Date: Jul 2012
Location: San Antonio, Tx
Posts: 140
10 yr Member
Smirk mestinon

Quote:
Originally Posted by juliejayne View Post
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.
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.
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"Thanks for this!" says:
juliejayne (04-04-2016)