Do you have copies of your PFTs? If not, get them. They might not know your "normal" numbers and could have thought the ones they saw were "ok." I wish they would have done an arterial blood gas. Did they do your O2? Most techs don't save all of the MIP and MEP numbers. But in MG, having all of them is important, due to how we become weaker the more we do. If someone is stable, the numbers might be the same. If not, they'll be worse with each attempt.

I haven't seen Kaminski, but he does have a good reputation. However, many neuros tend to have massive egos. I hope he will be kind to you and respect the evidence.

The problem is that you are on drugs that suppress the immune system. That means the tests for MG might be normal now. Kaminski would probably view the SFEMG as more important that antibody tests, though they are both important evidence. Antibody production varies, and the severity of MG is not necessarily reflected by how high an antibody level is. There are other antibodies in MG, such as LRP4.

If he wants to redo the SFEMG, the test might be normal due to being on immunosuppressants. There are some people who are so bad, though, that they test positive even while on them.

MG is a clinical diagnosis that is backed up with tests. A thorough neurological exam is very important. The N-O and neuro you saw might not have been confident enough in diagnosing MG to realize that there are many presentations of this stupid disease. Some people can be very weak and test negative, while others can look fine and test positive.

If you can have a plan for "whatever it is" you have (sarcasm), any hospital can follow that. A good diagnosis is essential, but having a plan to treat a disease is more so. Kaminski can do that. A diagnostic letter is also a great thing to have from an expert.

I have no idea if you have MG. But the fact that you become weaker the more you do is indicative of myasthenia. What is concerning is that you aren't better on steroids yet. Please be careful of any withdrawal plan. After being on steroids for more than a few weeks, the adrenal glands tend to not work any longer due to the steroids doing that job for them! Withdrawal should be done slowly, or a person can have an adrenal crisis. That alone can tank MG.

That's probably more than you wanted to know, but there really is so much to know about MG. And having that knowledge helps during any doctor appointments, having tests, or managing the disease. I really hope that Kaminski can figure all of this out for you!


Annie