You have been through an awful lot, and it sounds like there is more than one thing going on. There may not be one process causing all your symptoms, but co-morbid conditions.
You mentioned that CMT has not been tested for. The tests are inconclusive as while they are instantly improving they do not include all the mutations, and many carry an 85% accuracy rating. Does anyone in your family have neuropathy symptoms? Sometimes CMT only affects people as they get older but some types, like mine, are present in childhood and steadily worsen. I had poor coordination as a child, was unable to run or play sports, and have always walked funny. Numbness started in my toes in my early 30's. I believe CMT is under diagnosed although it should have been caught with all the testing you have had.
Are your reflexes normal?