CIDP pregnancy stories please

    • March 26, 2017 at 2:44 am

      I was diagnosed with CIDP during my first pregnancy two years ago (it hit halfway through). It left me in a wheelchair for a while, but I recovered well and am off IVIG and prednisone. We’re thinking of having another child eventually, but I’m very scared of a relapse and of having permanent damage that could have been avoided.

      Can you share your CIDP pregnancy stories? Did you receive treatment during the pregnancy? Did you experience a relapse or flare up? Did it leave you with permanent damage?

      Thank you for sharing!

    • April 18, 2017 at 10:10 pm

      I’m 17 going on 18 and I was 16 when I got pregnant. While I was pregnant my legs started giving out. I had sciatic pain in top of it and my ob told me it was just sciatica nerve damage. By the time I had my son(In May) I could not walk. At all. I had to do physical therapy for months and was still not able to run. No one knew what I had. By November I still was not back to my normal self but then I had double vision and blurry vision. We went to the I doctor and they did 2 hours of testing before telling me that it was all neurological. So we went to my regular doctor and discovered I had drop foot and no reflexes. I had blood tests and an emg. That is what lead us down the path of cidp. I spent a week in a hospital, getting ivig, and a week in a rehab. Now I have ivig every four weeks. I’ve finally got a little better but still cannot keep my balance or stand hours on in or run. Will symptoms get worse if I want kids in the future?

    • April 19, 2017 at 12:24 am

      I hope you know that CIDP isn’t hereditary. You will not pass it on to your children. As far as your recovery from it goes, you have only had CIDP for a little more than a year it seems. Unfortunately the disease takes sometime to abate, if it’s going to at all. Because of the types of nerve damage that CIDP can do, many medical professionals consider the two to three year mark to be the time we will heal the most. Symptoms still present after three years may stay with us for many more years.

      The good news is that newer treatments are always coming out. This forum is full of discussions about these newer treatments. There is HSCT, Rituximab, Ocrelizumab, and many more listed in these forum posts, along with links to neurology reports that cover additional treatment options.

      Here is a booklet that may offer helpful info about CIDP in Teens:

      Its way too early to say, and not likely, that you would get worse in the future if you were to have kids. Give yourself more time to see how you heal, maybe another year or two at least.

    • April 20, 2017 at 1:56 pm

      In 1995 my wife gave birth our oldest son, and was diagnosed with GBS within a few days, although the symptoms presented themselves for a couple of months prior to birth. In 2001 she gave birth to our second son. She was not on any medications at the time of the second pregnancy and her condition had stabilized. When we thought we wanted a second child, we met with her Neurologist, our family doctor and our OB/GYN (who also did research on his own). She had no relapses, no flare ups and permanent damage (other than what she already had).

      As her husband, I was a nervous wreak. Every sneeze, cough or anything that resembled an illness, I was on the phone with doctors and constantly babying her.

      This is a decision you need to make with your doctors and spouse.