Oh ya, I hear you. I've been going for years too. I know "that look" like the back of my hand!

Your symptoms sound mg-like except for the pain. There's a lot of disputing the pain issue, with neuros saying no pain but some patients complaining about a lot of pain. I definitely have had pain associated with other muscles trying to compensate for weak muscles particularly in my neck and upper back. My posture is terrible and has been for years, I just can't seem to hold myself up anymore.

I hate to tell you this, but 1 neuro is a drop in the bucket. I've been to 7 and am still trying to get a diagnosis and prednisone even though I've twice tested positive on the antibodies. I don't know where you live but you may be near an mg specialist which would be great. As for the antibodies you should definitely be retested. Make sure that it gets sent to the Mayo lab. I can send you a link if you like. I had my son's pediatrician send his there and it was no problem. Even your gp could do it.

I started off with extreme fatigue too. Looking back on it, I think that was caused by weak breathing muscles (which I didn't really put together since I thought the shallow breathing was caused by something else - maybe a heart problem since my heart was racing full time even lying down). That combined with severe sleep apnea, also from the same cause, also unknown to me, was causing me to sleep about 18-20 hours per day. I would have slept 24 if I could have. Even when I wasn't sleepy I had this horrible, horrible exhaustion like I had a black hole inside of me. Ugh, I still get that.

I wish I had a magic answer for you, but I don't even have a magic answer for myself. All I can do is encourage you to not give up. If you're like me, slugging on through all the sickness and exhaustion for yet another few years is daunting and overwhelming. Still, you have to keep picking yourself up and trying again and again.

Ally