I don't know what to say, JJ.

It might not be MG, but it might be. A clinical exam is not sufficient to know for sure. Yeah, it can be revealing and MG is a clinical diagnosis backed up with tests, but there are patients who don't have obvious signs. If it was so obvious, how could my multitude of doctors have missed my MG for 41 years?!!!

All I can say is what I would do. I would make another appointment with the same neuro (possibly). I would bring someone else with me who knew me and my symptoms. I would write down exactly what has been happening, to not only document symptoms, but to have a paper trail of what I gave the doctor. I would not be argumentative, yet I would be firm about the fact that something is going on that is making a serious impact on my life. I would ask for the MuSK test. I would ask them to consider LEMS and CMS.

I would seek out a second opinion from someone such as an endocrinologist, since some hormone problems can cause weakness.

Have you seen a neuro-ophthalmologist?

I really don't know what else to say. I find these types of situations beyond frustrating. The patient ends up being a ping-pong ball, going from doctor to doctor, with not one of them thinking thoroughly about the situation. After which the patient is so beat up that they want to give up.

Take a step back, write some things down, and then plan what you'll do next. You can't give up on your search for help if you truly believe there is a health problem!!!


Annie