Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 01-28-2015, 09:25 PM #5
AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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It's a temporary fix. It does not build up over time, as immunsuppressants would. Sorry, but it's just a helper drug and it's effects are short-lived.

I'm really grateful for it, though, even if it only gives me two good hours of improvement! I will say that, over time, it does help for me to consistently take it every three hours. That way, my body gets a fairly constant supply of acetylcholine. Don't adjust your dose without speaking to your neuro, though! Everyone responds to Mestinon differently.

There's also the issue of supply and demand. If you do more, your body might use up acetylcholine faster. Talk to your neuro about upping your dose when you do an activity. It might take you a while to know how your body responds to the drug, though, and how you might change the dose amount or the spacing in between doses.

I love walking on the beach, too, especially the white, gulf beaches. It's a tough workout for the legs when you have MG.

You'll find other things you like, I'm sure. The most important thing is to not push MG. It'll push right back. Some "newbies" do that and end up in a MG crisis. When MG gets that much worse, it takes a lot longer to recover from it. It took me a month and a half to recover to an "okay" point (after steroids).

You'll get used to having MG. Cut yourself a break and try to think about your life in a new way.

Annie
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