Anyone been diagnosed with CIDP? It's very rare

It’s actually not that rare, it’s just there is no test to diagnose it. It’s a process of elimination and finding the experienced neurologist that can recognize it. It is a very misdiagnosis auto immune disease because of that.
I suffered from neuropathy for many years with my local doctors saying it was normal because. I was getting older.
I went to neurologist and several was sure it was pinched nerves in my spine. I told my doctor I wanted to go somewhere that could give me answers, good bad or indifferent. He asked where and I said UF Shands in Gainesville Florida four hours away. My wife had a stroke in 2017 and the local hospital shipped her there. We personally witnessed how outstanding the facility was. It made our local medical system look like the Middle Ages. Seven days in the neuro ICU and she came out fully recovered.
It took six months to get an appointment for me at Shands and my first appointment was with a neurologist that just repeated what my local doctors had said. I kept pushing and he finally agreed saying due to Covid, it would take months to schedule the testing. I replied that the sooner we started the sooner we would have answers. He reluctantly ordered the testing.
Fortunately this moved me to another neurologist and during a nerve conduction test, he rolled his chair back and said I didn’t have neuropathy but had an auto immune disease. Not curable but controllable. More testing was needed to confirm but it was CIDP.
He started me on weekly IVIG of Octagam. Within eight weeks I was pretty close to normal. Tried backing off to once a month and I crashed. Another eight weeks of IVIG to normal before trying every two weeks. I just crashed slower. So I’ve taken weekly IVIG and it keeps me functioning normally. So I’ve been doing this for going on five years.
I’m lucky that the doctor was able to set me up with home infusions so every Sunday my nurse shows up and I have all the equipment ready. It takes just over 3 hours and it’s a pain that no matter what, I have to be home every Sunday. But I’m fully operational. I run my business everyday, do yard work, drive,, ride a bike.
So far reading these forums, I’m the only patient that has weekly IVIG. Everyone else is either monthly or every two months and still have problems.
I’ve often wondered if their doctors switched them to weekly IVIG, would they recover and lead normal lives.

There is a lot of people with CIDP. I take IVIG Panzyga.
CIDP is an autoimmune disease and you likehave more than one autoimmune disease. I would suggest you go see a rheumatologist and be tested. I was diagnosed with CIDP and then with lupus, sojourns, Hashimotos, RA and mixed connective tissue disease. They did genetic testing on me and it’s in my genetics. I had severe trauma when my son was hit by a drunk driver and no place in Texas will accept him for rehab. Due to the stress it triggered everything. Here is some websites.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/chronic-inflammatory-demyelinating-polyradiculoneuropathy
https://mcpress.mayoclinic.org/cidp/all-about-cidp-what-is-it-and-how-is-it-treated/
https://my.clevelandclinic.org/health/diseases/cidp-chronic-inflammatory-demyelinating-polyneuropathy

@tjp4 Same here!