Thanks, Annie. I've thought that too (re: lupus), every time I go into another downward spiral. As someone else mentioned, though, the diagnosis itself is less important than the treatment. But many of the doctors I've seen are unwilling to treat without the diagnosis. During my bleeding episodes, I was sent to Johns Hopkins for an evaluation for Ehlers-Danlos syndrome. The genetecist I saw there took my history and told me to go to a rheumatologist. I told him I had done so many times and that the rheumy didn't help. He asked me how I deal with my health situation then. I told him I manage crisis to crisis. Then he looked at me and asked, "How's that working out for you?" And it's true. It's not working out so great for me.

I live in the DC metro area. I went to Mayo in Minnesota. I am awaiting the results of the MG tests and a re-test of ANA and then I plan to contact them again to see if they can offer any suggestions.

I believe this has been done and I've not generally had any problem in these areas (fortunately!)

I don't generally get rashes anymore. When in the sun and when I exercise, I get red in the area you would typically see a malar rash, but it subsides after a few hours of not being in the sun and not exercising and I don't know if it would qualify as a rash, per se.
I've looked into plaquenil in the past, but never pursued it. When I'm doing well, I don't want to rock the boat, and when I'm not, we're dealing with more of a crisis and changing so many things because of that, so it's hard to make one more change at the same time. I'm almost as much to blame as drs for this because I've had so many complications resulting from unnecessary surgeries and horrible side effects from medications that I'm wary too.

There are many times when I completely agree with you. But there are moments when I recognize how complex and convoluted my situation is and how worried doctors must be given the excessively litigious society in which we live. I am frustrated with my circumstances and get really upset when I work with idiot doctors, but there have been a number of good ones along the way who have tried, but just haven't known how best to proceed. Often I wish I knew more myself so I could manage my own care better.

I have anticardiolipin antibodies which are part of the diagnostic criteria for antiphospholipid syndrome diagnosis. They haven't been tested in years because it doesn't really matter. This is a diagnosis that sticks regardless of a return to titer normalcy.

I didn't feel bombarded. I also think and work systematically in an analytical framework. sometimes this really helps. At others, it causes me to dwell on things a little too much as I try to get every ounce of information possible out of every experience. Since I recognize this flip side of the coin, I work really hard to limit the time I allow for analysis of events that feel traumatic to me (like my "episodes").

Anyway, thanks for your suggestions, comments and support. I really appreciate your insight and your willingness to share.