Quote:
Originally Posted by AnnieB3
PMCPMC, Do you have an "informal" name? Welcome.
It isn't self-indulgent at all! When I first suspected that I had MG, another forum was invaluable for me to figuring it all out (plus finding a good neuro).
The amount of time Mestinon lasts is not "different for everyone!" It's basically a finite amount. It can differ depending upon someone's metabolism but this is how it works, according to the drug company, MG experts and my own experience.
Mestinon will kick in anywhere from 20 minutes to an hour. About 2-1/2 hours after taking it, it's effects will either begin to run out or run out completely. Most people have a good solid two hours of "extra acetylcholine" because of it. I know that the standard dosing is every four hours but some people do take it up to every two hours. I take mine every 3.
Of course, no one should change their dose amount or the frequency of it without consulting with the prescribing doctor! There may be some doctors who aren't as knowledgeable about it though. Work with your doctor, like you did, to figure it all out.
You are so lucky that you got diagnosed quickly. That's fantastic.
Annie
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Hi Annie ,
Patrick here,
thanks for your advice.
Learning a lot very quickly.
Mestinon every four hours even during the night,all alarms set on my watch,
has given me control over my breathing at no point under stress.
Still learning that I have the disorder and still think I can do everything I used to after the medication is taken.
Very often giving myself muscle strains and then wondering why I am sore.
Throat closing going.
Kidney infection also seems to being trated by the antibiotic.
Repeatable use of my neck muscles and then strain is hard to remember not to do as you use your head for everything.
I am left sided and find my left side and arm which I use normally a lot are the ones most coming under strain