Marsha, What you have sounds like alopecia. That's often more associated with lupus. It is not "caused" by MG. There are other causes for hair loss, however, and an immunologist might be able to help, too.

Many people with autoimmune problems have more than one disease, unfortunately. If there's even a chance that you have lupus, it needs to be diagnosed and treated, especially due to it's potentially damaging effects on the kidneys. Has anyone done a urinalysis to look for protein? When someone is on steroids, they have to look at other tests to try to uncover what's going on.

Since you are on steroids, any autoimmune testing they would do right now would more than likely make the tests come up negative (false negative).

I would suggest two things. One, get a second opinion from a rheumatologist, hopefully a lupus specialist. Two, find a MG expert who "gets" that steroids make antibody tests go negative. A Single Fiber EMG, however, might still be positive.

May I be blunt? Don't you dare let anything or anyone destroy your self-esteem! Hair grows back, especially when an underlying disease is treated. In the meantime, there are really great wigs these days. You have the right to look and feel beautiful, no matter what is going on with your immune system. I don't know what it feels like to lose hair, but I think most women would hate it. So I can't know how you feel. But there are ways to make your situation better.

I'm just really sorry that the doctors aren't helping you with some obvious issues.

BTW, have you had a Schirmer test? Do you have dry eyes or any sign of Sjogren's?

There's also the possibility of polymyositis as well, which is more of a fixed weakness. A good neurologist would know the difference, since MG is all about fatigable weakness.

Muscles don't atrophy overnight. That's very odd. Again, you need a thorough evaluation!

Also, I think a visit with a hematologist about the low iron is a very good idea. Sometimes you have to go to more than one specialist to figure out what's going on. They are experts on the blood and would probably investigate more thoroughly than a rheumatologist!

I really hope that you'll get some more help!

Annie