I've had symptoms for a year and a half now, and I don't have any respiratory problems, even when I'm at my weakest. When I'm very weak, I have some swallowing problems--just the muscle at the top of the back of my mouth, and sometimes my coffee goes down the wrong pipe or I get a feeling like the food has gone up my nose. For me, this is very mild, but a bit alarming, and I found out that "trouble swallowing" is a symptom that gets taken very seriously, even when it's mild. "Doctor, I can't walk" "Hmm...can you come in next week?" "Doctor, I'm having trouble swallowing." "Go to the ER."

Almost all of us are on Mestinon because it's a relatively safe drug, though some people here (not me!) have stomach side-effects from it. Most of us are taking immunosuppressants, though some of us can't tolerate those, and my unofficial observation is that all the people here who are on steroids are trying to get off them. For that reason, I am trying to avoid them, though I know that sometimes MG can be so dangerous that they're simply necessary. A lot of us also have IVIG or plasmapheresis either regularly or occasionally.

BUT: please note that some people with MG go into remission, either spontaneously or because of the drugs. You won't meet too many people in remission here, simply because when you're in remission, MG stops being such a big part of your life and you tend not to spend a lot of time in a forum like this. So don't get the wrong impression by what you read here! We are not the success stories--at least not yet. But there are success stories.

When I was trying to get diagnosed, and hearing contradictory things from different doctors, I was in a terrible mental state. It is real suffering, and don't let anyone suggest otherwise. When I did get a firm diagnosis, I was ecstatic: not because MG is a picnic, but because now I could just deal with the disease itself, and not that other thing--the emotional burden of not knowing. It is very real, and very heavy. I hope you get answers soon.

I wanted to say, to your other question of whether anyone has ever had a positive antibodies test followed by a negative one: that must be rare, simply because if the symptoms suggest MG, then the blood test clinches the diagnosis. So I don't think most people in your situation get tested again. I really don't get your doctor's insistence that your day-to-day variations rule out MG. And I bet that you have symptoms that an experienced neuro could pick up even when you don't notice them yourself (my neuro claims I have double vision, though I never notice it, and another neuro see ptosis I can't see).

Abby