Hi, Whitecap. I'm fending off a MG crisis right now, but I wanted to say a few things.

You don't need the shots, but you do need to have methylcobalamin B12 every single day, probably for the rest of your life. Two 5 mg. tablets twice a day to start, then one 5 mg. twice a day after a few months. It takes as long to recover from a B12 deficiency as you've had it. You're on fumes of B12! Mine was 101 at diagnosis.

I like the Jarrow brand, which you can get on Amazon. You need B12 for every single cell in your body. Some of your symptoms might be from the deficiency, but I doubt that all of them are. Please get some B12 and take control over your health! The body can't do without B12!!

Did your doctors even attempt to figure out WHY you are deficient? Celiac disease, pernicious anemia, overuse of antacids, and a lack of stomach acid are the top causes. Did they check your parietal cell or intrinsic factor antibodies?

That Medscape chart of AChR antibodies is only showing the "mean" antibody level for those classifications, not the range of what is positive on a lab result.

0.0 to 0.02 is negative for the AChR BINDING antibody. If what you are referring to is the binding result, then you have a positive MG test! Can't your doctor read? Or was he referring to the AChR MODULATING test?

http://www.mayomedicallaboratories.c...erpretive/8338

Look at your test results or get them if you don't have them!

Ditto on what Sue said: Get a second opinion from a MG expert if you can.

A neurologist isn't a pulmonologist. Those stupid handheld breathing tests are not as accurate as formal breathing tests! Find a pulmonologist and have thorough breathing tests done. They need to do MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure), which are specific to neuromuscular disease. Also, make sure they give you ALL of the results and not only the highest one. Why? Because trends in those tests are important for MGers. If the numbers keep getting lower, chances are you are not doing well, because MG gets worse with repetitive activity.

If you are so bad that you can't breathe well, can't swallow well, or can't move well (or any combo of the above), then dial 911. A MG crisis is serious and can happen quickly. It doesn't matter if you don't have a diagnosis. You have a positive test result (if it's the binding one).

I think that neuro was worthless, in my opinion. To ignore someone with your symptoms PLUS a B12 deficiency (we need B12 to make acetylcholine), is highly dangerous.

Please seek out some more help right away. I hope you'll be okay.

Annie