Well the letter to my doctors seemed to have helped with one of my two next steps. Tomorrow I am scheduled for a PET scan to help determine where the disease is attacking my nervous system. I am not totally sure what this information will help in terms of treatment options but I will hope for the best.
Interestingly the test is part of a clinical trial so expenses for getting in and out of London are paid for by the trial. The procedure is an all day one given that I have to have both an MRI and the PET scans. I am not claustrophobic but spending almost three hours in a tube does not sound like fun.