"Lately I have been thinking about what is next for me. currently I seem to have lost feeling below my waist, anyone else ever experience that?
For the first time since I moved here I wish I had never left Massachusetts. My level of care for my SMA is minimal. None of the Neurologists here are neuromuscular and they have never treated someone like me. I was in the ER for 3 days waiting for Radiology. Only to be told that the only thing they see is a lack of B-12 and I need to see a Neurologist to find out if it's an SMA thing or B-12, so I have been taking the B-12 shots as they made an MDA Clinic appointment. The appointment was a total waste of time. The neurologist said it could be either or, and didn't run a CT Scan or anything, all of my doctors refer us to Mass General but they refuse to give me an insurance exception. It's so frustrating."