Hi! I have myasthenia gravis and do wish to help you, if I can. Please come on over to the MG forum here so that more people can help you!

http://neurotalk.psychcentral.com/forumdisplay.php?f=77

I am so sorry you were treated so badly. It is so obvious that you have a serious medical condition and NOT a psychiatric one.

I think you need to not only have care but proof of MG.

Have you been to see a neuro-ophthalmologist? They can assess the muscles around your eyes and tell you if they "fatigue" and get weak, causing ptosis (toe-sis).

Have you seen a pulmonologist? They can do basic breathing tests. Ones they should do that are specific to MG are MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). They show how well you are doing breathing in and out.

You should have had your oxygen tested for with an O2 Monitor, had arterial blood gases done, had breathing tests and been given oxygen. They could have diagnosed you with a Tensilon Test - though it's a little dangerous when someone with MG is that bad off. They could've simply given you a small dose of Mestinon to see if you got better! They DID NOT do anything logical or useful for you.

It sounds to me like you were in an MG crisis. The way you were treated was horrific. You can DIE from an MG crisis when not given the appropriate medications, as you obviously know.

Overmedicating with MG is not good either. Too much immunosuppression is not necessarily good. Prednisone is very hard to get off of. Are you still on it and Azathioprine (Imuran)? Did someone test you for the TPMT enzyme BEFORE you took it? The drug can build up in your system if you don't have that enzyme.

How much Mestinon are you taking?

I can't believe they gave you a pain med. Did you have pain too or just weakness? Gabapentin/Neurontin can actually cause MG, so stay away from that one!

Are there any good neurologists who specialize in MG there? If so, please find one. You need to probably have a Single Fiber EMG test done. And you obviously need some serious ongoing care in case you get worse again!

You need to stay out of the heat. Heat makes MG so much worse. And don't overdo things!

Please let us know if there's any more we can do to help. Come on over to the MG forum and we can, at the very least, support you while you are going through this.

Again, I'm so sorry you've had to go through this. Believe me, I do know what it's like! Take care.

Annie