I'll try to be brief. = ) Have had a droopy eyelid for years when I'm tired. About a year ago, started having double vision early in the day and late in the evening. Didn't think much of it since my vision has been terrible since I was a child. Around May 2012 - the double vision became constant, along with some throat numbness (feels like I have to think to swallow) and difficulty breathing (catching a full breath most days is difficult for me.)

Neurologist ran several tests -was thinking I had MG but then blood work was negative and my MRI scan showed I had a rather large brainstem compression called a Chiari Malformation. This was believed to the cause of my symptoms and I had decompression surgery in October 2012.

While I was home recovering from the surgery was the first and only time my symptoms got better since they started, but as soon as I went back to work, they came back with a vengeance, plus a new left side limp that comes and goes. I figured that was part of the surgery but my surgeon says it was not and sent me to a neuro ophthalmologist.

The NO says he is inclined to say I have MG whether blood work shows it or not and asked me to go back to my neurologist (the original one) and ask him to treat me for MG. I did and he started me on Cellcept and prednisone with the prednisone only for a month. I have noticed no difference in my symptoms. I asked him to let me try Mestonin and he will do a trial, however says that it is very strange that I didn't respond to the steroids and that maybe that means I do not have MG. I'm so confused.

If I don't have MG, than what do I have? Neurologist is referring me to a neuromuscular specialist and we will see what's next. But I’m getting so tired of it all - just wish it would show up on a blood test and I could have a clear answer and try and get better.

I'm 34, work full time, have an hour commute each way and three children. I really need to know what's going on so I can get on with functioning.