Reply To: Newly diagnosed with CIDP and Breastfeeding

Congratulations on the birth of your baby and sorry to hear what you are going through. I am also a mother of young children (5 and 3) and was diagnosed when they were both in preschool.

My understanding is that CIDP can go into full remission, or relapse and remit or progress. Not a very straight answer, but the disease varies quite a bit from person to person.

I have also read that CIDP is more successfully treated if caught early on. I think your timeline qualifies as “early”. As someone mentioned above, some people wait years for a diagnosis and then months for treatment (darn insurance!). The IVIG stops your body from attacking myelin, which can repair relatively quickly. If you have axonal nerve damage, it can take quite a long time. I’ve heard that any nerve damage that doesn’t repair after 2 years may never repair.

My neuro told me at the outset that I had to commit to 6 months of IVIG to evaluate if it is working properly, and I’ve seen other people on the forum report the same from their docs.

I don’t have any insight on your pregnancy/breastfeeding questions since my diagnosis was after that stage for me. But my research says that CIDP is not hereditary or contagious (not sure about the GBS side).

I have been relatively private about my diagnosis, but have sought support from this forum (mostly informational) and also a few facebook closed groups (informational but also more supportive). There are some good resources on this site to share with friends/family that educate laypeople pretty well about what you are dealing with. Good luck!