Myasthenia Gravis...

...is what they think it is. They did another nerve conduction study and EMG (5th one in 9 months and it's a very unpleasant test involving needles in muscles) and upon repetitive stimulation, my muscles showed a decreased response over time. This, along with a good, old-fashioned hunch has led Dr. Niceness to believe I may have Myasthenia Gravis. He's not sure, so lots of tests and CT scans have been ordered to verify.

He said that in only 75% of cases does the patient actually have the positive antibody for MG that will show up in the bloodwork. But even if the antibody doesn't show up, he thinks this is still my poison--based on my history and the EMG results from tuesday.

Good news: He thinks that I may live an almost normal life (he just doesn't realize I WILL live a completely normal life) based on my age, etc...

Bad news: He thinks I may be ineligible for treatment via IVIG (by far the easiest treatment ) because my elevated Ig-A antibody levels indicate that I'm extremely susceptible to a severe reaction. This means that I can only be treated with Prednisone or Plasmapheresis or both depending on which one works.

Next step: beyond the blood work to verify (or not) that Myasthenia Gravis (MG) is my particular autoimmune disorder, I will have a CT scan of my chest to determine the presence of a thymoma.

Dr. Niceness noticed that in the rare cases he found where MG and dysautonomic neuropathy (my earlier diagnosed problem) was present together, removal of the thymus gland was very effective in helping put the disorder into a state of remission, if you will.

So--now we wait for the tests and results. Then we try to mix and match treatments until we find something effective for me because these steroids are not very effective and they are too harmful for me to continue taking for very much longer.