It saddens me to hear you are doing so poorly. Unfortunatly, I feel that I am in the same boat as you. For the past 6 months my functioning has been declining. I have been getting weaker (slightly) and much much more spastic. I can't bend my right leg when I am laying flat on my back. No change on my MRI's as of late June. Just moving around the house has been incredibly difficult and my right hand and arm have been very uncoordinated.
I have started water therapy and will continue to work hard at that and, unfortunately, Revimmune put me into early menopause, so we are working on a good regimin of bioidentical hormones and perhaps those will help.
I really hope you get to Dr. Dake to take care of the CCVI. Unfortunately that is not an option for me right now. I am still better than I was before the Revimmune, but I guess I was hoping for so much more.