Reply To: Have you relapsed and recovered?

September 14, 2020 at 12:15 pm

Thanks so much for the responses. I’ve always known CIDP is a remitting/relapsing disease, but I’ve never really had a remission and relapsing is terrifying. My neurologist, who is considered one of the best in our area, got the idea that my worsening weakness and nerve pain, etc., was all due to my lower back problems, and for the better part of a year he’s done nothing to help me. Now I am so sick that he can’t deny that my CIDP has worsened. He thinks my body has gotten used to Gamunex and switching to Privigen might help. I start Privigen next week. I am in dreadful condition and feel as if I should be getting intensive treatment of some kind, but the doctor wants me to get Privigen once a week and wait a couple months to see if it helps. I feel like I’m back at square one and don’t know what to do.