Nicky, I haven't been doing well lately so I've not been on much. I've been giving this topic and Alice's post on steroids some thought though. Sorry, this may be long.

Years ago, I think most practicing neurologists "gave up" on MG. Since they labeled it the "most well-known autoimmune disease," I think they thought that meant there was nothing more to know. WRONG.

And like what has been said by so many here, there is a lot of information from old documents that has been forgotten. Specifically the details about the disease and how it affects patients. And to think that MG is the only thing that could possibly go wrong in the neuromuscular junction is simply illogical. Have you seen illustrations of the NMJ? It's quite complex.

There are some researchers out there, like Dr. Angela Vincent, who have not given up and realize that they discovered only the part of the MG iceberg - or should I say neuromuscular junction iceberg - sticking out of the water. MG is so different for everyone and I honestly believe that they will not only discover more antibodies but that they will figure out other "animals" that are similar to MG and will also have MG subclasses - like they do with MS.

Sometimes these more technical conversations aren't what people want to read about but they are very important. What if we, the patients, come up with ideas that neurologists and researchers - who don't have the disease - haven't thought of because they don't live it. These discussions are important; maybe not for everyone but for many. It can be hard to bring them up because so much is not known. It's a lot of speculating and many people like only concrete answers.

Artists, like me and so many others here, use both sides of the brain equally. We integrate left and right to come up with better solutions and faster. No, that's not an elitist statement because every single person is capable of doing that! Many people, unfortunately, are not taught how to be creative. If only doctors could do that more often.

What extreme left brain people tend to do is jump to judgment right away instead of looking at ALL of the facts. You could easily miss something when you do that. Sifting through a problem using both sides of the brain may make a lot of people uncomfortable. Why? Because it is fraught with failure and most people want to feel good. Failing, or criticism, doesn't exactly make people feel good. Failure/creativity is not about failing! It is about trying to find the best solution for a problem. You have to go through a lot of possibilities to get to that best one or ones. So you have to be willing to look stupid, not be taken seriously, be judged. Though you won't get that from other "whole brain" creative thinkers.

I used to work in creative fields and it was the most fun I've ever had. Working around people who love solving problems is the ultimate job for me. Wish I could still work. If only doctors could think of their jobs that way - they might actually have fun and get better at it. No offense meant, Alice!

I really believe that many neurologists tend to be extreme left brain thinkers. They are often control "freaks" who don't like anyone questioning them. They will say or do things that may upset you but they think it's "ok" because they say it is. They could care less what you think because they are arrogant and often narcissistic. They often come up with quick answers which may not be accurate and are not very good listeners. They will often stick with algorithms and not think outside that doctor box.

I don't often label people like that but when a group of doctors present themselves in this same way to me over and over again (with luckily a few awesome exceptions), I tend to believe that is how they truly are, at least as doctors.

So when people like you, Nicky, both need and want to spend the energy and time to look these things up and think about it all, we all need to say a HUGE thank you! Looking at MG honestly and with an open mind is absolutely needed. I only wish more doctors and researchers would do the same. I understand the need of the ego to feel good about itself but I also understand the importance of not settling on a "fact" that may be a "shape-shifter" as MG most likely is.

Doctors see themselves quite often as authority figures and they don't want to be seen as "wrong." Who does? But not having all the answers is not being wrong. What is wrong is blaming the patient for being sick or saying they are fine when a doctor can't immediately come up with any answer other than you must be depressed, anxious, have fibro, have chronic fatigue, are hysterical, it must be that time of the month or whatever ridiculous, illogical and fairy tale version of science they come up with to get them off the hook for not thinking or working harder.

There are hundreds of CMS mutations. There is the odd myasthenic - LEMS. There is MG in lots of different presentations. That's a big list already. I imagine there's more. Like me who only has modulating antibodies, which 3 - 4% of MGers do. Which could be only due to the Flovent I'm on or the IgG3 deficiency or whatever. Who knows. But there are a LOT of variables here that are not being thought about or pulled together. And what is the ultimate goal?!!!!! Listen up, neurologists. It is about HELPING the lives of people with these diseases, not furthering your careers or covering your tushies to keep from having a lawsuit.

Okay, that's enough from me, eh? Time for bed.

Hang in there, everyone.

Annie