Hi, FirstOldOne. Do you have a more "informal" name? Welcome to the forum.

First of all, I'm sorry you are going through so much. And I honor your service to our country in Vietnam. My Dad was one of the representatives to the Paris Peace Talks for Vietnam, so my heart always goes out to VV's.

It sounds like you have more than one thing going on.

I have MG and have had many EMG's (RNS and Single Fiber EMG). It's not clear from what you describe which test you had. In a SFEMG, you have to, for example, lift up a finger in your hand while they are testing your forearm. More isn't better with the test and it sounds like the person doing your test was being, well, a jerk. Was this person an MG expert? Do you have your test results so that you can say for sure what test it was?

If you don't have your records, get them!

Did they say you had MG? MG is all about weakness that gets worse upon exertion/repetitive activity and relatively better with rest. Do you get worse after you do an activity, like walking up stairs? MG is fatigable weakness where most other diseases have more of a "fixed" weakness.

Did they check you for Acetylcholine Receptor Antibodies or the MuSK Antibodies for MG?

What does the Mestinon do for you? What dose do they have you on? What side effects are you having? I had to laugh at what you said, Mrs. D., about it being potent since some docs treat it like it's a placebo.

I have absolutely no side effects of Mestinon other than it makes my muscles stronger. It kicks in after about 15-30 minutes and then starts wearing off two hours after that. If you suspect you have MG, you need to see and MG expert!

I agree with Mrs. D. about the B12. I had a deficiency years ago and I need to take the sublingual methylcobalamin daily in order for my B12 dosing to be sufficient. The fact that you still have a peripheral neuropathy means that you either aren't taking enough or something else is causing it. I get my B12 (Jarrow Formula, 5 mg. sublingual) at www.iherb.com because their prices are so good and if you get a certain amount, you can get free shipping. You might even need 2-5 tablets three times a day for awhile. You put it under your tongue and it absorbs into the bloodstream. Believe me, it not only works better than shots but then you don't have to have the cyanide that is used in the purification process of the cyanocobalamin shots!

I'm not a pharmacist but I would question WHY they have you on so many drugs. Have you asked your prescribing doctors why? Sometimes doctors think that more drugging is what's needed instead of more thinking.

Has anyone checked your vitamin D level? A deficiency is quite common. What about celiac disease? What's your ancestry? People of Northern European ancestry are at a higher risk of celiac disease.

Did they look for a cause of your high blood pressure?

I hope you have a primary doctor who you can trust and can help you figure all of this out. If I can be of any further help, please let me know. I am usually on the MG forum but have been a bit busy of late. You need someone to go over everything that's going on and make sure that something isn't being missed. AND you need to see your medical records for yourself. Doctors can do a lot of great things but patients need to be assertive in their own care - as it sounds like you are doing - in order to get the best care possible. Hang in there. And get some B12!!!


Annie