I have had a wild ride with CIDP to say the least. I woke up at 3 and could no longer walk, after every test under the sun my mother desperately (i say that with the upmost love) harassed a doctor at John’s Hopkins to diagnose me. It took two years to get a diagnosis because I was one of 8 kids that young to receive a diagnosis for CIDP. I have spaced out treatments and relapsed to the point that I had to do physical therapy to relearn walking. BUT GOD IS GOOD! I ran cross country in high school and today I am 5 months away from becoming a registered nurse! I am at the age where I want a mini me of my own but there is little to no research on the matter. My neurologist is optimistic and says that I can carry and come off all IVIG. Obviously that scares the hell out of me because I get 1g/kg (higher dosing than most) and I can tell when I am getting closer to my txs. So how does adding 40+ pounds and not getting IVIG make sense? He also mentioned putting me on predisone if I were to get weak or have problems but I spent 3 years on steroids in the beginning and it’s hard to even look back on childhood pictures because I was so large I couldn’t fully smile, so I am pretty much opposed to no roids. Has anyone successfully carried and had no issues? Any info would help!
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