Jenny, Given your teen symptoms, didn't anyone think lupus? What about polymyositis? Do you still get rashes? If so, has anyone done a punch biopsy? If they tested you for lupus back then, has anyone done so since? Lupus is a multi-system disease, as I'm sure you know, and it can wreak havoc anywhere it wants to. Including the GI tract. Have you consulted with a gastroenterologist? Did they check for the cardiolipin antibodies? Given your heart issue, you might want to get that checked out right away. Do you have a rheumatologist you can see?

Silly Mayo doctors, what does the heart have to do with muscle weakness.

Are you weak on a daily basis? Do you have trouble doing simple tasks?

I hope you'll get your vitamin D checked. And B12 and folic acid.

Does your double vision go away if you close one eye? Binocular DV is what MGers have and it goes away with the closing of one eye. Monocular DV does not. Have you seen a neuro-ophthalmologist to try to determine why the DV? A regular ophthalmologist is not the way to go.

I volunteered my design/writing to the local lupus foundation for 10 years, so I know a lot about it. I can't help but think you could have that AND another AI. Yeah, you could have MG. Fluctuating muscle weakness is the hallmark of MG. But patients with polymyositis can look like an MGer too. My aunt had that. Have they done a CPK (creatine phosphokinase) test?

http://www.fpnotebook.com/cv/Lab/CrtnPhsphkns.htm

I'm sorry to say that it sounds like you need more doctoring. Always get a second opinion if someone "decides" you have a disease state. Mistakes do happen in medicine. I really hope you can get help with all of this. I'm sorry you've gone through so much.

Annie