Thread: Mestinon
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Old 11-03-2009, 02:08 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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Hi, Renee! Welcome. Another Floridian. How do you guys take that heat?

I've been on Mestinon for almost nine years. It has a bit less impact but still "works" for me.

There's always the possibility that something else could be making MG worse. The obvious culprit usually is the thyroid. There are other possible reasons. Do you have a good primary doctor too? It might be good to check with your neuro and them.

And do you have a pulmonologist? If you are having trouble breathing, you really should be assessed by a pulmy. Neuros don't do that nor do they have the equipment to do it! My pulmy has standing orders for MIP and MEP (neuromuscular specific breathing tests) to be done if I get worse. It's a great arrangement that every MGer should have.

Sometimes the Timespan can "overdose" you, making you weaker. The time release is not "perfect" and you can get too much at the time you are taking the other dose of regular Mestinon. Just a thought.

I hope you can figure out what's going on. What about IVIG? Is your neuro an MG expert? If not, there is one in St. Petersburg.

Annie
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