Got back all the antibodies-- all negative. One was elevated a lot more than the others but within range so still negative.

So . . . the neuro who was almost certain of his diagnosis two weeks ago has changed his mind, which is kind of what I was expecting but it's still a blow. He said he still wants to see me and I shouldn't give up on finding an answer, but he's not sure MG is that answer. He's still going to write the mestinon prescription though. He said if I think it's helping I should have it because it's very safe and won't hurt anything, and who knows what will turn up later. He hasn't done the single fiber EMG yet because he said he didn't think it would show anything since most of my weakness is around my face and neck. So that could still happen at some point.

I guess in the meantime I'm going back to rheumatology to be worked up for myositis. Maybe, anyway. My last CK was normal so idk if she'll still want to do the muscle biopsy and all. And she said she might order a second standard EMG because she was unhappy with how it was done before.

Interestingly, I've gone off vicodin, which I've been on for a few years now for the fibro pain (it didn't respond to standard treatment. It actually DID respond to plaquenil and methotrexate but once all the lupus tests were negative no one wanted to keep me on it). Apparently it was masking a chronic low-grade fever (because of the tylenol I guess). Either that or the fever is new, but it showed up the day after I stopped the vicodin completely so it would be an interesting coincidence. Temps have been hovering around 99.5 in the evening, normal in the daytime. No cold symptoms or anything to explain it. I guess if it keeps up that'll be something to discuss with the rheumatologist.

Basically I'm wondering if I should just resign myself to not having any answers at this point. It seems unlikely that anyone will find anything. They seem to be just sitting back to wait for the next symptom to reveal itself. And I got the "it could be worse" lecture from the neuro when expressing frustration with the lack of answers. I do get that it could be worse and I am grateful it's not MS or ALS or any of the other things for which they've tested. But at the same time it's still not normal and I don't feel like I should just have to live with it because it's not as bad as it could be. Unfortunately I think that's pretty much where we are.