I am in an awkward position. For over a year now, my doctors have been going back and forth about whether I have myasthenia gravis. I have a lot of symptoms that seem like myasthenia gravis, including ptosis, weakness in my limbs, trouble swallowing, choking on food/saliva, drooling, and especially difficulty with breathing. I have significant weakness in my chest wall. I also have trouble with my eyes. Two of my doctors think I have myasthenia gravis, my pulmonologist and my ophthalmologist. However, the neurologists do not think I have myasthenia gravis, and this is a problem, because they are the ones who need to prescribe treatment. They think I have some sort of a neuromuscular problem, but they don't know what it is. For some reason, my tests have all been negative except for the various breathing tests, which all show significant problems with the muscles of my chest and my breathing function. I will be getting a non-invasive home ventilator soon.

Also, I take Mestinon, and my symptoms respond to Mestinon, but I think the dose needs to be raised. I also think I need to take it more frequently, but the neurologist won't consider it because I don't have myasthenia gravis. It's like being on a roller coaster. I get partial relief for a few hours, three times a day. Then it wears off and I'm back in the same mess again.

I wonder if other people have run into similar problems, and if there was any resolution to it. Over the past few weeks, my breathing was so bad that I wondered if I should go to the hospital, but I didn't know that they could help me since there is no myasthenia gravis diagnosis and thus no treatment they could offer.

Thanks to everyone here for this forum. I wish everyone strength and peace for the challenges you are facing each day.

Take care,
Erin