Hi,

I did get the test for MUSK, this was also negative.

The problem with the ptosis is that on exertion it first resolves somewhat and then gets worse. This makes it look like it doesn't get worse. I made a video of this, but the neurologist seemed to think I did it myself . I can feel this phenomenon in other muscles as well now, although it isn't really clear in daily life. But if I get up from my chair for instance I can barely do that without using my hands. Then if I do it a second time it suddenly seems to go a lot better. An after a few times it gets harder again till the point that it’s impossible. In daily life you don’t get up out of your chair so many times after each other. In other activities I seem to have developed lots of compensation skills. I can demonstrate the fatigability of other muscles at any given time, especially in my neck. But if I do that in the neurologists office I am afraid the 'she is faking it thought' gets worse.

I did the ice pack test and made a video of it. I also made a video of myself second after a hot shower and some minutes later in a cool room and after cooling with cold water. Especially the difference between with the hot shower/cool room is very clearly visible. It’s the difference between my eyelid hanging a little over my pupil and no ptosis at all.

I don't get severe breathing problems or swallowing problems luckily. On the other hand that's one of the reason's the neurologist doesn't believe it is myasthenia. He think I should have gotten a crises at least once (my symptoms go back to my youth, so I'm walking around with them for 25 years already, luckily most of the time mild to moderate, but the bad periods screw up my life every time). Even in bad times I am almost never unable to do something at all. It just takes an awful lot of effort and breaks to get something done.