I wanted to start a post for you, since you are not having a good time right now.

Do the doctors in Australia realize that the majority of inhabitants came from England years ago?!!!! Just like in America, we all came from elsewhere except Native Americans. Oy. And England and other European countries have one of the highest rates of congenital myasthenic syndrome?

Funny thing about CMS too; some people don't test positive on the EMG's, that's why they go to the genetic blood tests or muscle biopsies right away. And that is what a CMS expert has said about it.

Are you on any medications that might've altered the results? And people with mitochondrial problems may not have a positive EMG. Damn. There are a LOT of neuromuscular diseases out there, and weird stuff like glycogen storage diseases, that cause weakness. I am thinking your neuro is out of his league.

So what can we do to help?

Maybe if you seek out a 2nd opinion, somewhere else, without saying what you've had done before. I don't know, this is a dicey area with doctors. They can often badmouth you to other doctors if they know you are going somewhere else. Been there, done that.

When doctors go directly to the "must be in her head" BS, I go nuts. Do they really think all women are hysterical? I heard a doctor say on TV this week that WAY back when (like yesterday), doctors thought a woman's uterus or "hyst" would move around their body and that would create whatever symptom they are having. I guess yours has migrated to your muscles. Hyst is the root of the word hysteria. I wonder, she said rhetorically, what the root of the word assuming is, as in a doctor who makes incorrect assumptions.

Most patients do not want to be sick. And it is dangerous to so quickly classify someone as having a psychological problem instead of a real one. You are the one who suffers.


Annie

Almost forgot, do you have ptosis/droopy eyelids? Have you tried taking photos of your face? Doctors find it hard to argue - even though they do anyway - with that kind of evidence. And seeing a neuro-ophthalmologist is a good idea too. And having pulmonary function tests done if you are short of breath. Stock up on that evidence!!!!