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Old 05-07-2009, 04:20 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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Joanmarie, I'm sorry you are going through so much.

Do you mean Alpha-1 antitrypsin deficiency? Have your doctors explained what effect that has on the liver (and lungs)? It may be that you are not technically "allergic" to drugs but that drugs are not sufficiently metabolized by your liver. Do you get hives and other symptoms of an allergic reaction? Have your docs suggested anything you can do to help your liver? Would milk thistle help or would that not get metabolized either? Obviously you can't take anything without talking to your doctors first. What about taking enzymes?

Have you spoken to a metabolic expert? An allergist or immunologist?

Have you tried drinking coffee? I know it's not a sufficient replacement for Mestinon but caffeine is a cholinesterase inhibitor just like Mestinon. Maybe it would help a bit on those tough days.

It is a huge adjustment to go from "normal" to MG. The hardest part for me was adjusting the expectations of myself. I'm not a sit at home type of person either.

I hope you can find a way to deal with this stupid disease. And the other genetic one you have.

Annie
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