Rach, Yeah, I think it's funny too how everyone but the neurologists can "see" you have MG. Well, funny but not since your life can be threatened by it.

A lot of neurologists are psychiatrists first. Maybe that's why they insist that our symptoms are all in our heads.

I'm just glad you got the kidney infection under control. Now they should try to figure out WHY you are getting them.

Hmmmm, infections can make MG worse. Make the infection better, make MG better. Duh.

Obviously your doctor doesn't understand what happens to chest wall muscles in MG. I think you should ask for that referral over to the neuros who know what they're doing. To make sure they don't get into their "blacklisting" mode, you can always say that this other guy was really nice but he might not have understood all the details of MG or something like that. It's amazing how "threatened" doctors can feel - and how quickly.

Sorry if I can't remember but did they do arterial blood gases on you?

I'm glad that guy said the same thing about cortical plasticity, that it's total BS. Because it's not a disease but a way to talk about the state of the brain. Cortical Plasticity is GOOD to have. Means your brain is still "pliable" and can function well.

If people haven't been through this kind of crazy doctoring, it's hard for them to even wrap their minds around it. How could doctors possibly do that to a patient, right? When you are going through it, it is the most threatening, crazy-making and disgusting experience. I am sorry you have had to go through all this. I know firsthand what it's like. All the evidence is making a bee-line to MG but they can't see it to save their life.

Hang in there and keep getting better! You're lucky it's been coolish in the UK lately.

Annie