Reply To: Lack of clinical markers? What could be going on?

October 13, 2017 at 11:02 pm

Thank you both for the responses, and thanks for sharing that case study. My doctor is a neuroimmunologist. I also saw a neuromuscular specialist in June who did my repeat EMG and questioned my dx. They are at Oregon Health Science University, which is not a center of excellence. There aren’t any centers of excellence in the pacific nw. My oldest friend is actually a neurologist at UCLA (she specializes in neurobehavioral genetics) and she recommended that I try a hospital that is NOT a research institution, as they might be more likely to treat me without hard data to justify the treatment. She also thinks I should go to Mayo if I can’t get a dx here, but there’s no way I can afford to travel that far.

I sent a message to my neurologist with a rundown of what I’m experiencing and put the ball in her court. We will see what happens. I am pretty confident IVIG would help me, based on my rapid response to treatment in the hospital. But after what I went through in June, I doubt they will give it to me without a clear dx. 🙁 In the mean time, I’m limping along. If I stay like I am now, I can probably cope for at least awhile. If I get worse, I’m going to have to file for FMLA again.