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.

I feel for you. I expect to be in the same situation myself after one more visit to the Neuro.

But I can't accept the "it could be worse" lecture. After all if the tests for MG are negative and those for MS, ALS etc etc. It doesn't mean that you haven't got one of these terrible conditions, it simply means that the tests haven't found it yet.

Where is the real world "Dr House" who will move heaven and earth to solve a riddle and find a solution?

And probably almost kill you in the process. lol

But yeah-- I get where they're coming from, especially if they've never had an illness that couldn't be explained. Everyone I know eventually says the same thing. Surely it's good that you don't have a life-threatening illness.

Well, it would be nice if not getting a diagnosis meant that the problem went away. It just means you still have the problem but no explanation or treatment.

I too had all the MG symptoms but all labs and that horrible muscle function test came back normal. At least your Neurologist didn't want to send you to a Physch doctor. After getting a second opinion from the Chief of Neurology that diagnosed me with exam and then the Tensilon test. He started a treatment plan that is giving me much improvement. Ask your Neurologist about Tensilon. It's an injection given IV in the emergency dept. it took about 5 mins for my strength to come back and 15 mins for it all to go away again. I tried Mestinon with no results. Keep us posted. I really hope they figure this out for you.

This is something that is far too easily accepted. It may not be live-threatening... directly but without a diagnosis, and therefore without treatment, the following will happen to me, and many others will follow a similar route.

No Mestinon, then no energy, unable to work or interact with other people. Stuck in a single room. Will put on weight, if I eat.... no exercise. Will waste away if I don't eat. Will get depressed, whichever way it goes.

Inactivity, depression, probable obesity, will then lead to atrophy of muscles etc. 2 years down the line, I will be suicidal, totally lacking in self esteem, unable to argue or disagree when they finally decide to treat me for something else.

I think you get the picture. Not life-threatening? Oh yes it is! Just out of sight of the professionals who should be helping.

I just want to say that I hate doctors..............