Alice, I knew you'd have the background on these articles. I had questions but just wanted to get the input from you. That's what I liked about the first article too, that it FINALLY said MuSK can be atypical. MG is atypical.

What I find sort of funny is that PubMed articles often are portrayed as "the truth" when the truth can be anywhere from A to Z.

I think that a big reason so many doctors cling to these ideas of what the truth is (i.e., you can't have MG without a positive SFEMG) is because if they or other "experts" proclaim what the truth is, then saying later that it's not entirely accurate is either calling them a liar or calling them into question. It's as if no one in the medical profession can handle being wrong. If only they'd see science as something that evolves; that's not static but plastic. It doesn't mean they are less as doctors or humans are less valid. The ironic part of all this is if they would be more open to variability from the beginning, they would look more valid, more reliable.

When they first began this "MG hypothesis," they proclaimed the only antibody was the AChR one. Oops, they were wrong. So then they padded their theories by saying that 80% of people with MG have the AChR antibody, 15% have the MuSK and others are "seronegative." Oops, they're probably still wrong. There are indications of a number of other areas in the NMJ that are being attacked. But until the "mammoth institutions" proclaim this fact, no one dares to go against what they say.

It's a very closed-minded way to look at the world.

This sort of sums up how I feel about the way neurologists "see" MG. The human body is so complex and I simply think it makes THEM feel better if they have an MG algorithm to guide them. MG will never pay attention to an algorithm.

"Saying a patient’s MG is mild, or nonexistent, is mildly amusing. MG is like a noble gas, also once mistakenly thought to be “inert.” Add movement and heat and you have an MG explosion. It’s not easy to see how a patient’s MG is truly doing while they’ve been sitting in an exam room for over an hour, early in the day, resting their muscles. That’s perhaps the most ridiculous part of “examining” a patient with MG and declaring they must be fine. They should put us in a sauna for one minute, watch us plod up some stairs and then examine us, since heat and activity make MG worse. MG patients can get weak on a speed spectrum from uphill slowly to downhill fast. Like doctors, you have to see MG in action to truly know how dangerous it is to a patient."

I'm sure your son is correct. And that's so sad. I hate that there are others out there, suffering for the inability of the medical world to think creatively. And to have faith in what they are seeing, not in the imperfect testing.

I found it interesting that there's such a high number of people with MG in China (especially childhood onset). Why? Toxins? That was in other articles I read. Their society is so relatively secretive that we may not know why for centuries.

Shalynn, I'm still not convinced you don't have CMS. Or an odd variant of MG. Have they tried to see if plasmapheresis or IVIG helps? Some doctors will do that to try to determine if it's genetic or autoimmune.

Jenn, Sorry, I only had abstract access while Alice has the ability to read the entire articles. We peasants, I mean patients, don't deserve to read full scientific information! As Alice knows, as much as they talk about sharing info, so many of them don't want to because that would mean someone else would take credit for their "discoveries." Because of this attitude, so many drugs or information are slow to come out. We would probably solve problems a lot more quickly if people weren't so greedy.

When I'm exhausted by doctoring, as I am now, I like to do more research. Learning helps me to feel more empowered and believe that there is "hope" out there for patients of all diseases. Maybe if doctors (no offense meant, Alice) and researchers stopped getting in their own way, we might have half a chance at better lives. I think they need to take courses in creativity, so that their brains remain wide open.

Annie