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Old 08-06-2011, 06:26 PM
suev suev is offline
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Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
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Hi Gabriella,

I was dx'd in June 09 and started 15mg generic (mestinon) every 4 hours then. I had no side effects and some improvement of in symptoms. Gradually changed doses and frequencies until finally determining what really works best for me.

Now understand, my neuro has been on board, is supportive, and has 'blessed' this (unconventional) dosage. And I am considered 'very stable' - have never had swallowing or breathing issues and am lucky enough to respond extremely well to generic mestinon.

With that said, I take:

30mg every three hours that I am awake - - and none during sleep hours.

I add 30 mg if I am going to be doing physical activity (I golf and garden - but not in this heat!) - and spread the dose to 4 hours. And, there are times when I'm feeling terrific and I'll skip a dose in the middle of the day or spread out the frequency.

It has taken a long time of fiddling with dosages and me gaining an understanding how my body is signalling me what it needs...and there are still times when I wonder why I'm feeling better (or worse).

Try to be tolerant and work closely with your neuro. There is no magic. It takes time to find the right balance...and sometimes, even then it doesn't last.
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