Jenny, I am at a loss. It is quite clear that you probably have lupus. Lupus can fluctuate and you can be okay for days, weeks or months and then go into a flare. You have the antibody, clinical and symptom proof for lupus. Do you mind my asking where you live? Did you go to Mayo in MN, AZ or FL? I might be able to recommend a rheumatologist who is good. And a dermatologist.

Lupus is dangerous. Has anyone checked for protein in your urine or done a chem panel looking at your kidney function? Both should be done. There are many more drugs available than Pred. With your GI bleed history, a good doc wouldn't recommend Pred anyway. Do you still get rashes? What about Plaquenil (relatively contraindicated if you have MG)? And did anyone do a lupus band test (skin biopsy)? Good grief, I'm really blown away by the lack of thorough evaluation and diagnostic expertise here. Don't let your doctors off so easily. It's their JOB to figure these things out. Could any of us keep our jobs if we didn't do them well or left them unfinished? Well, a lot of us MGers can't work.

People with cancer "look fine" too. I hate that prejudice. It's much better to look good than to feel good, right?

So, you have phospholipid and cardiolipin antibodies?

Sorry, I didn't mean to bombard you with questions but that's how my mind works. How a patient "thinks" about doctoring is often more important than facts and algorithms. My gut instinct is saying that you have lupus but I'm not a doctor. It's not nothing with all of those positive test results and symptoms. I really hope you can find some good doctors and sort all of this out. We all deserve to have good, prompt medical care and to feel the best we can.

Annie