View Single Post
Old 08-08-2012, 03:22 PM
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
Default

Quote:
Originally Posted by Stellatum View Post
Steph, I'm pretty sure that the shot you're going to get is Tensilon (similar to Mestinon). The reason they use it diagnostically is that since it's a shot, it takes effect right away (instead of having to enter your bloodstream via your digestive system). If you have drooping eyelids, and they suddenly un-droop after the shot, that's just about as good a way to diagnose MG as anything.

MG is so very variable. I myself really don't know if Mestinon helps me or not. Sometimes I think it does, and other times I think it's just a coincidence, because I tend to get stronger and weaker without knowing why anyway. But the Tensilon shot gives such a clear and quick result when it comes to eyelids that it's considered diagnostic. No one ever tried it on me, and I think the reason is that I don't have ptosis.

This is all just my understanding. It may be that your doctor will test the results of the shot on your other muscles, too. But I think the eyelid thing is clearest, and least subject to the placebo effect, or something like that.

I'm so glad the Mestinon helps you. Remember that (as you've discovered) it has a quite short half-life. Most people find that after 4 hours, it's pretty much done doing whatever good it's going to do. So if your doctor will prescribe it, and agree to let you work on finding the right dose for you, the usual way to increase its efficacy is not to take higher doses, but to take the doses closer together. Do be careful, though: too much Mestinon will make you weaker.

Abby

Thanks for your insight...i think reason not done is probably bcs I dont have as much problem with eye droop either...more muscle weakness/blurred vision. In any event, I am 100% confident the pills are helping (and 100% confident not hurting) - maybe I should offer to sign something that I wont sue for malpractice for giving me pills - lol
StephC is offline   Reply With QuoteReply With Quote