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Old 05-30-2010, 06:41 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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Debra, Let me clarify things for you . . . MG trumps everything, especially tests.

MG can be fine on a certain regimen of drugs and then go downhill. It is not predictable and there is not an "algorithm" for predicting what it will do! You can go out on a Friday, get worse on Saturday and even worse by Sunday. I often get a 2nd day payback after I go out that is even worse than the day after.

Did you up your Pred to 40? Up your Mestinon to 90 mg? Do you feel that your symptoms are fluctuating from hour to hour instead of day to day? What I'm wondering is if the higher dose on Pred is making you temporarily worse. That would tend to be more of a consistent weakness but not necessarily. If you are getting worse off of Mestinon and better on it, it's probably the MG.

Some doctors are more cautious than others about doing plasmapheresis. It is invasive and you have to be watched carefully (fluid issues, etc.). But it can give doctors a clear idea of whether or not a patient has MG.

Antibodies can circulate or be "tissue bound." Just because you didn't have any antibodies show up does not mean you don't have them. There are, according to people like Dr. Vincent, the probability of many more MG antibodies which they have not determined yet.

You have to trust your instincts with MG, not a doctor's. No offense to doctors at all!!! Only you can tell if you are getting worse and need to seek out care right away. And sometimes a person can get weak so slowly that they don't notice it until they are at a crisis point.

I will say again that, even if you went off of all drugs today, the effects of them - especially Pred - would not be out of your system by Thursday. The more important issue is making sure you don't have another crisis. What you have gone through does sound like "classic MG."

I hope you will talk to your doctor and discuss all of this. If you get worse, please go in. Try not to do much of anything, sleep a lot (which really helps), don't stress out and stay cool. If that doesn't work, you need help!

Annie
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