Athena,

I am so excited to read your post! I have a weird weakness that doesn't seem to match anything I can find on the internet, and yours is the first description that even comes close.

I'm not quite sure if you're describing matches my weird problem, which is also hard to explain. Here goes. I tilt to the left and right (and sometimes backwards) from the waist up. If I tilt to the left, I try to straighten myself up and go too far and tilt to the right. So sometimes I swing wildly back and forth like an old-fashioned metronome.

If I am only mildly weak, I can compensate by walking with an exaggerated swing to my hips, only this gets me cat-calls on the street, so I try to avoid it.

I am honestly not sure which muscles are causing this--I think it's the muscles in my sides and lower back.

When I'm tired, I can't walk. My upper body starts to tilt in one direction and that throws me off balance, and I have to either stumble to catch myself, or I crash into a wall. I use a wheeled walker sometimes to hold my upper body straight, but it's not that helpful anymore, because when I'm tiltiest, my arms are also weak.

I tested negative for the MG antibodies (and LEMS also). But I think I have MG, and I think eventually they will find the antibodies. It's not so uncommon to test negative at one point and positive later on. Have you had a single-fiber EMG? There are people on this list who tested negative for the antibodies but are diagnosed on the basis of their SFEMG.

I take Mestinon even though my doctor thinks I don't have MG. It helps me a lot. That is, it doesn't seem to help me at all except when I don't take it--and then I notice how much it was helping me.

Anyway, I wanted to say: hello sister! I am happy to find you. I wish you strength and answers.

Abby