Reply To: Have you relapsed and recovered?

September 17, 2020 at 12:17 pm

I had lost 80% of the nerve function in my legs before I was even diagnosed — and I also have serious axonal damage, which is unlikely to ever be reversed. I have been told by three long-experienced, highly rated neurologists that the older a patient is, the less likely it is the myelin damage can be repaired. If I were in my twenties or thirties, I would have a chance of regaining a relatively normal life. I’m in my 70s with tremendous damage already done. I’ve been more or less holding steady on Gamunex since I started treatment in March 2017. The amount of IVIG has been gradually increased to 50 grams a week. Now I have apparently stopped responding to it at all. I start Privigen next week. If that doesn’t help, plasma exchange is probably the next step. My symptoms of relapse/regression are extreme weakness in my lower legs, a return of numbness/tingling/shooting nerve pain in my hands and feet, an overall level of fatigue worse than anything I’ve ever felt. I feel as if I’m barely living anymore. COVID and the closure of doctors’ offices kept me from persuading my neurologist of the seriousness of what was happening. He couldn’t do a neurological exam on the telephone. So I’ve grown sicker and sicker. If I went to an ER, they wouldn’t have the slightest idea what to do. They wouldn’t know what CIDP is.