I’m in a similar boat with “atypical” CIDP. Not a classic presentation, but everything else was ruled out. I seem to be responding to IVIG. From what I’ve read, diseases like CIDP might really be a spectrum that the medical world is still learning about. But if it responds to a treatment, I guess it doesn’t matter what we label it. My neuro was very anti-steroid with the CIDP diagnosis. He had discussed steroids earlier on when he thought it was auto-immune and inflammatory, but hasn’t wanted to touch steroids once he got closer to it being specifically CIDP. Not even for back pain and not even for the orthostatic hypotension (a different steroid, not what would be given for CIDP).

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!

Marvin, If you ask the CIDP group about those physicians, chances are some of their actual patients might respond.

I was prescribed a very typical protocol of 2g/kg over 4 days, then 1g/kg every 4 weeks. Perhaps ask your doctor why s/he chose this regimen for you.

LMayberry,

Your story breaks my heart. It sounds like you need an advocate. Could a family member step in? I know you don’t have anyone who lives there locally, but perhaps something could be done by phone? Or maybe a social worker or the local liaison from the CIDP Foundation? If you’re paying that much for a nursing home, it seems you should be getting regular therapy and also participation in group activities in the common area where you could meet others. Best of luck and I’m thinking about you.

My normal BP is 90-100 over 50-60. During infusions my systolic drops into the low 80s. The nurse seems mildly concerned and sometimes turns off the IVIG and gives me a bag of fluids, but we always finish. To my knowledge, she hasn’t consulted anyone about this and I’m fine as long as I get up slowly and let everything settle out before I walk anywhere. She commented once that if the drop in BP were accompanied by an increase in heart rate, she’d be more concerned.

I was diagnosed with orthostatic hypotension in 2004 by a neurologist (long before the CIDP diagnosis in 2016). That means a drop in blood pressure upon standing up (my autonomic nervous system doesn’t adjust as it should). This leads to dizziness which I’ve just lived with.

But since starting IVIG, I’ve had more dizziness and some shortness of breath. I bought a BP monitor and pulse oximeter and sometimes my BP is down in the 70s systolic! I think the cuff is right because I’m very consistent in my method, and just came in at 95/56, so that’s fairly normal, even at a doctor’s office.

Here is an excerpt from an article
“The standard IVIg dosage is a loading dose of 2.0 gm/kg administered intravenously over 2–5 days, followed by 1 g/kg over 1 day every 3 weeks.”

Here is the article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533/

Dr. Kenneth Gorson gave a very information talk about CIDP to patients that is posted on this site. (It’s the one that shows the conference room with tables as the first image.

Videos

My doctor followed the above protocol with me, except that I receive treatment every 4 weeks not every 3. My insurance approved every 3. My doctor did indicate that you can’t reasonably evaluate the effectiveness of IVIG until after 6 months.

Good luck!