Hey, Paul. Welcome to the forum! It sounds like you're really having a hard time. I'm sorry about that.

Well, I'm no psychic so I'm not sure what your appt. will be like.

Usually, neuros do a thorough clinical exam for MG which includes things like the upward gaze test to see if your eyelids will fatigue/weaken. They might test you for double vision (DV) by moving their finger in front of your eyes slowly from side to side. When eye muscles weaken, you can have DV in any area of your vision. With MG, when you close one eye, the DV goes away. Do you have ptosis/drooping eyelids?

Some neuros actually check your oxygen saturation, though it's usually pulmonologists who do that and breaathing tests. Do you have any breathing problems? Shortness of breath?

I don't know if you've had any EMG's but they can do an RNS (repetitive nerve stimulation test), a regular EMG or a Single Fiber EMG. If they haven't already, they can test for the AChR Antibody test (binding, modulating) and the MuSK antibody test, like Abby said.

If you end up being diagnosed with MG, they'll probably send you for a CT scan of your chest to look at the thymus gland. Some MG patients have hyperplasia or a tumor of the gland. Don't freak out! Not many people get a tumor. Some people get a thymectomy, removal of the gland, in an attempt to give them a better chance at remission - though it's not a guarantee.

If you get diagnosed with MG, there's a lot to learn about it. So, come on back and we'll help you out as much as we can.

I hope you and your doc can figure this out. It's sad that you've suffered for so long without a definitive answer as to what's going on. Keep asking questions!

If you get to the point of not being able to walk at all, are generally really weak, can't swallow or breathe well, then it's time for the ER, as in dial 911. If you have MG, you can get so weak that it can be dangerous. I'm not trying to scare you but to let you know that MG can get pretty bad. You might need additional support like oxygen or they might need to diagnose you in the ER and get you some drugs! So don't be shy about going in if you get worse, okay?

Take it easy and try not to overdo things.

Annie