I was diagnosed with CIDP about two years ago after a misdiagnosis 8 years earlier. I get iv/ig two times every three weeks. My situation has remained relatively stable. I also work with a physical therapist weekly. Unfortunately, I cannot reverse the damage. I have no sensation (total nerve damage) in my ankles and big toes on both feet, however, my calf muscles, which had atrophied, are now stronger and I can get up from kneeling on one knee. My balance is better. Prior to iv/ig, I fell several times. I fell once even with treatment but nothing beyond that. At my last check up/EMG, my neurologist found I have the beginning of nerve damage in one finger of my right hand. I do wish I could reverse the damage. I told my neurologist that I would be open to trying experimental treatment but he told me that I should stay the course since I'm doing well. Has anyone been able to reverse the damage caused by this disease and if so, what medication did they use?
Thanks.