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Old 04-05-2010, 04:13 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
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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This is my opinion, based on my conversations with the neuro I saw for 7 years who is an MG expert. And my experience with Mestinon. I'm sorry if any of this upsets you. Again, this is only my opinion and I have no idea of what your situation is.

Taking Mestinon every two hours is way too soon for you. You haven't been taking Mestinon for very long. My neuro won't even prescribe it that way for me and he knows how methodical and sensible I am. I think he would if I said it was absolutely necessary but it isn't. That regimen is normally reserved for MGers who have really bad MG.

The other thing that I think you are doing is looking to Mestinon to make symptoms go away, as if taking it every 2 to 2-1/2 hours will make everything okay. Maybe I'm reading into that but taking it that often can be dangerous. The varied strength of Mestinon is a reality of the drug. And MG as a disease. Again, increasing amount or frequency too quickly is not a good idea if you don't know what it's going to do to you. You do not want a cholinergic crisis. Then do you wait until the drug wears off to dial 911 if you do? This can be a very tricky situation with Mestinon, whether you have too much or not enough.

I think it's very prudent to get a 2nd opinion. Your neuro does sound very sensible. You don't want immunosuppressants if you don't know 100% that you have MG.

You are going to have to be ultra sensible if you try Mestinon spaced two hours apart. Do it during the week when someone else is with you. Do it during "office hours" in case you need to call your doctor's office if it doesn't go well. Be prepared to have to go to the ER to get atropine, in case you have symptoms of an overdose. If you don't' know what those symptoms are, read up on it first! If you do overdose, not being able to talk is one of the things that could happen. Do you have someone around you who knows what to do if that happens? If you live alone, do you have a recording to play into a phone if you can't talk?

Just think these kind of decisions through before you make them, okay?

I hope you can get proof of MG, if you have it. Sorry, but I'm skeptical until I "see" proof too. Obviously your neuro saw clinical evidence of MG or he wouldn't even have given you the Mestinon.

I hope you can work all this out. It's not always easy.

I hope you're doing okay, Maurice. I miss your country - I dream of it quite a bit.

Annie
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