Reply To: CIDP Burning Out

September 11, 2017 at 5:06 pm

Well I am trying my 1st 6-week infusion. Should have had my infusion this past Friday (at 5 weeks) and am trying to push out to next week. I was feeling fine at first so was excited that maybe I am in remission. But today I started to feel the heavy legs, noodle knees and feeling kind of shaky on my legs. I don’t know for sure if this is my CIDP but I feel it is since these are kind of the symptoms I experienced back in the beginning but they were much more pronounced at that time. Not sure what to do. I am feeling I should go back to every 5 weeks but my neurologist wants me to stay at every 6 weeks for a while to see if I stabilize out. But my fear is that I will progressively get worse and then might do some damage to my nerves. I was so well controlled at every 4 to 5 weeks that I pretty much forgot about my CIDP except for when I had to have the infusions. What is worse, the risks from IVIG or the risk of CIDP getting worse if not getting IVIG. Just torn.