Reply To: Remission and IVIG

December 16, 2019 at 11:47 am

I started with tingling and numbness in my feet about 10 days after the H1N1 vaccine. It almost felt like my feet were falling asleep. Mostly at night at first when I tried to sleep. Then it started in my hands a little bit. I would drop stuff for no reason. I knew something was not right so I went to a neurologist right away. She did a whole bunch of testing and was able to diagnose me pretty quickly with CIDP. I never had severe pain or loss of the ability to walk or anything like that. Just numbness and tingling. I felt relief pretty quickly after starting IVIG. Forward 10 years now and I still don’t have much in symptoms as long as I get my infusions on a timely basis. We tried to push out to 6 weeks a year ago without success. This past month I pushed it to 6 weeks and did well so planning on staying at 6 weeks for a while. If symptoms return will go back to 5 weeks. I would really love to go into remission but wasn’t sure if that can happen with just IVIG. My neurologist said CIDP does sometimes burn itself out after years.