Annie,

Thanks. I asked because I wanted to know. Obviously, a cholinergic crisis would be more upsetting than reading some discouraging news...

I've been taking 60 mg. every three hours for the past month. After two and a half hours, my neck muscles get weak so that my head flops from side to side. I told the doctor that the Mestinon seems to take care of that problem completely, but only for two hours (it takes the drug about a half hour to kick in).

Mestinon does make some of my symptoms go away, for two hours at a time. It makes the side-to-side floppiness of my head go away. It makes my double vision go away. It makes my tiltiness (weakness in the muscles of my sides) better. It doesn't seem to help the muscles in the back of my neck and shoulders at all.

I guess the point of taking it so close together is to get rid of that hour's gap every three hours, where my side-neck muscles get weak. But my neuro told me--and I have accepted--that the Mestinon alone isn't going to do it. I am reconciled to taking an immunosuppressant if they can convince me that my diagnosis is established.

Anyway, I will think carefully about this. I will either not take it so frequently, or take the other precautions you recommend: talk to my family, and read up on signs of overdose. I'll write up a card explaining what I'm taking and why, and who my neurologist is, and that I may be having a cholinergic crisis. I'll put it near the phone (I have homeschooled teenagers). Another copy in my purse. That's a good idea anyway, don't you think?

So far, I've had tests to rule out everything else they can think of. I've had a SFEMG (borderline) and antibody tests (both AChR and MuSK: both negative) and a thymus CT-scan (negative). The tentative diagnosis of mg is based on my symptoms, and perhaps my response to Mestinon. My neuro thinks it's established enough to give me Mestinon, but not enough to give me immunosuppressants, and I think I agree. The doctor I'm going to see next is a specialist in neuromuscular disorders, so maybe he'll think of something else to test me for.

Thanks, Annie, for this and for all you do.

Abby