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Old 10-06-2009, 02:26 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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Steve, Welcome. This is a great group.

I've never heard of an insurance company denying that blood test either, especially when they could get sued for getting in the way of someone being diagnosed and treated properly for a disease. It's just silly. Maybe if your doctor called and said you needed it.

The problem with going on only a response to Mestinon for a diagnosis is that even "regular" people can feel better on smaller doses. And people with ALS (no, I'm not saying you have that!) can get initially better. It's always best to have a solid diagnosis before taking it. You have to go off of it before the EMG's anyway and since new studies show that Mestinon can suppress the humoral immune system (which produces antibodies), it may also affect the blood test results.

Have you been tested for Celiac Disease? Of course, if your ins. co. won't approve MG tests they may not approve those antibody tests either! Have you ever had your B12 or thyroid checked?

I wonder about the stomach issue. Mestinon makes acetylcholine increase in the body. You need three things to make stomach acid: acetylcholine, histamine and gastrin. If you are missing one of those, you don't have enough stomach acid. And we lose acid as we grow older. So maybe the stomach issue is that you don't have enough stomach acid. The symptoms of too much and too little are similar. It's the food (undigested) and bile that back up with little or no stomach acid.

Sorry if I'm overwhelming you. Just trying to help based on what you've said. I hope you will seek help out sooner than January if you need it. Maybe even ask to be referred to an MG specialist for testing. Good luck.

Annie
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"Thanks for this!" says:
mrsD (10-06-2009), Steve47 (10-07-2009)