Quote:
Originally Posted by AnnieB3
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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I'm new to MG but not to chronic illness so I do understand. I think that's why I'm having kind of a hard time. I got my first diagnosis (fibromyalgia) as a teenager. Then they diagnosed lupus when I was in my 20s, and then they took that one away again because the test results failed to back up the diagnosis over time. Until 3 years ago it was fatigue and pain all the time. I quit my job and lost some weight and things seemed to miraculously improve. That's when I got into weight lifting. I even went back to work 3 days per week.
I was fine with the way things were because it was how they had been for as long as I could remember. But the way things got so much better and I had a taste of normal for awhile just makes it seem like kind of a cruel joke that I'm back here again and for a completely different disease.
I know I will be fine-- at one point I was used to having to take it easy, not let myself get too tired, spread my errands out over multiple days, etc and so I can do it again. But it just sucks.