Hello, I am SO so so sorry to hear of what you and your family are going through.. I hope and pray y'all find some answers with a treatment.. Has he had a lumbar puncture? (look for elevated protein and other causes), has he had MRI's of his head and neck? Does his emg show signs of mnd? Does he have muscle wasting? I think that doing an IVIG trial is essential (IVIG keeps me alive, and I don't fit into any box - i'm still a mystery).. have they tested for lyme, done muscle biopsies? checked for lambert eaton syndrome/mg? Tested for sarcoidosis (neuro involved- I believe the blood tests are an ace level and something else). I pray ya'll find answers, better answers for what's going on..