On the way to the hospital today, it was nice and cool. At some point I realized I wasn’t as droopy!
Another day, a few more possible diagnoses. It was the best visit ever with my neurologist. I guess it took the ER visit and misunderstandings to light a fire under him. He says I am too complicated medically for him….and too complicated for Utah. He suggested the Mayo Clinic or some other very large medical hub. He is willing to fill out any paperwork to facilitate that. He told me the best thing I could do is move to live near a major medical center like UCLA.
The neurologist thinks I have several autoimmune and neuromuscular diseases all wrapped up together. He says my extreme reaction to IVIg is not usual with just MG. He thinks I got remarkably better, remarkably fast. He is now saying what most docs before him have said…..we know IVIg makes you better, now we need a definitive diagnosis. The weirdest thing he said is that MG seronegative people become positive over time. He is doubting I have MG because I have been diagnosed all this time and my blood is still negative. My mouth flew open and I was about to educate him, but thought better of it. At least he thought I clinically LOOKED like someone with MG.
The doc wanted me to know he does simple neurological things….and sends all the complicated patients to the U. He wants me to go to the university to see a doc who specializes in GB and CIDP, who also can do SFEMG. Now we just have to wait to see how the politics of that play out. Long story. The word of the day is interesting. I don’t know why my hair is green in this video 🙂