CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

I've had IVIG infusions for 10 yrs for low IG and it does nothing for my neuropathy.

No relief and I get worse pain afterwards

Did the rituxan end up working? I was diagnosed with GBS in September 2024 after having my first baby. It came on during my third trimester. Now suddenly the doctors think I have CIDP. EMG shows significant axonal damage and legs and arms. I’ve been doing IVIG on and off ever since that but sensory wise have not improved at all. Motor wise, I have improved because I’m able to walk around my house and I was using a wheelchair and a walker for a while, I don’t walk normal tho I waddle around like a drunken penguin. Just so frustrated with this disease because it’s a long time and I have a baby to take care of. I am looking for any concrete answers from doctors, but I never get anything so I find myself, searching for people like you who are experiencing the same things.

Sorry for your condition...if CIDP is caused by your autoimmune system, then plasmaphereses will work best ( blood filtration). For your sensory issues I found out Sanexas treatment works the best along with B12 injections in your feet. Problem is -most insurances does not cover this type of treatment. After three month treatment ( twice a week) I'm off Gababentin and almost healed-my sensory feelings are coming back.
If you interested go to Sanexas web site and find out your local provider doing this treatment.
Hope this helps!

I keep hearing about CIDP. What exactly are the symptoms. Do you go to a doctor and say, "I think I may have CIDP. Will you please check it out"? I am so confused. Is it CIDP? Just plain old neuropathy? Cancer? Early stage Parkinson's? I am looking into Scrambler therapy. My symptoms keep piling up. It's like my body is in full rebellion and is determined to do me in. Retirement has not been much fun over the past four years.

A quick google search will tell you exactly what is CIDP -mostly caused by autoimmune system...
A neurologist is a start, the problem is- they are doing zillions of non sense tests, but not going straight to the horse mouth -which is MRI for peripheral nerves..
My neurologist kicked me out and ended up with a podiatrist who did a skin biopsy-sure enough I have SFN. But what is the cause? I suspect my Covid vaxx is the culprit...
I'm still trying to figure out how to persuade someone in the medical field to do an MRI on my peripheral nerves-if the nerves' root are inflamed, then the blood oxygen is prevented to supply my nerves...

I took the quick quiz on CIDP. I ticked a lot of the boxes. Can’t get any local docs to go any further than an EMG(which showed neuropathy). Too busy to look any further. Pretty frustrating. Thanks for responding. Much appreciated

@bestmom14 Welcome to Mayo Clinic Connect! You are certainly having a rough time and with a baby even! But you have been making strides and moving forward! Do you have adequate help at home>

I have CIDP and have been on IVIG infusions every 3 weeks for about a year with minor gains. I was diagnosed when my neurologist did the EMG. He caught that there were very different responses in my legs and ordered a spinal tap to confirm the diagnosis. I think the spinal tap is the key to confirming if this is the issue. I watch the threads for other treatments, but nothing seems to work consistently and individual effects vary considerably. Good luck!

I'll see thanks for the help.