Oh, boy, Annie is taking me on! Thank you, Annie. I know that your energy is very limited.

I am going to pursue all of your links, but first I'm going to answer your questions.

My ancestry is (as far as I know) 100% Eastern European Jewish. Now, before you wonder if I might possibly have late-onset Tay Sachs, I should mention that I have seven siblings, none of whom has symptoms like mine. Plus, my weakness is definitely fluctuating.

I don't have ptosis. My left eyelid is a little closer to my pupil than my right, but that never changes. The neuro-ophthalmologist who diagnosed me thought I had Cogan's lid twitch, and I can actually see it. If I open both eyes wide, my left eyelid goes higher than my right, and immediately settles down lower than my right.

LEMS tested once: negative. No muscle biopsy. CPK tested way back in the beginning, normal. I never eat turkey (vegetarian!). The last time I had novacaine at the dentist it was fine. I haven't tried albuterol, but I tried primatene tablets for a while, without noticing a difference. I avoid tonic water. I only drink alcohol in bed, except last night when I had a beer in a restaurant and hit the floor on the way out, which was really, really embarrassing .

I have never had breathing problems, even when I'm at my weakest. I actually have had a bit of double vision, but only two episodes, both lasting only an hour or two, in the whole 3.5 years I've had MG symptoms.

OK, the Imuran. There is pretty good evidence it's working. The doctor started me on 100mg, which did nothing, then 150. When he finally upped it to 200, I got much better after about a month. That lasted about four months, and then I drifted downwards again. Then he upped it to 250, and again after a month on that dose, I got noticeably better--but only for about six weeks this time, and I drifted down again.

I have had three experiences of IVIG: the first was five days, and I think it did nothing, or very little--I was stronger for about two weeks, but that could have been the normal ups and downs. The second time, I got six weeks of pretty good strength. The third time we tried it for only three days instead of five, and I had no response that I noticed.

I will follow up on your links and see what I can figure out. I am 46 years old and the second of eight children. My older sister is 47, and my youngest brother is 21. My parents are 70 and 69, and have no symptoms similar to mine. My mother's sister, age 65, recently had an episode of weakness and double vision which they thought was a stroke but later decided wasn't, and I asked her to pursue the possibility of a CMS, and haven't heard from her. I will follow up on that.

Family history: Graves disease and atopic dermatitis. My son and I both had temporal lobe seizures (no loss of consciousness) briefly at age 21 for a few months and then they went away. My daughter has Alagille syndrome (heart and liver defects), but she seems to be a de novo mutation. Three of my kids are being followed by a cardiologist for possible Marfan syndrome. There seems to be a lot of undiagnosed Asperger's in the family (ahem...obsessive information-gathering is a good thing, right?).

My thyroid seems to have settled down. I am wondering if the flu in the house (I have no symptoms still) put my immune system into overdrive, and it briefly launched an attack on my thyroid and then settled down again. I'm no longer twitching and trembling.

I had no weird neurological symptoms until three years ago, but my overwhelming memory of childhood is being tired. I slogged my way home from school every day. I spent hours in bed reading every day in the summer. I was always bad at sports.

OK, I'm going to see what I can find in your links. Thanks again for thinking through this with me. If my disease is not autoimmune, I need to know that so I can get off the Imuran!

ABby