Anyone been diagnosed with CIDP? It's very rare

Hi there. I was diagnosed with CIDP in 2014 and I’ve been receiving IVIG treatments every two weeks since then. I have had no progression in the disease and I have been able to work and enjoy life. I had to be patient in the very beginning until the IVIG began to show improvement. Perhaps you did not have a IVIG treatment for a longer enough period. You might want to look into Scig as I know that is covered under part D of Medicaid. I wish you luck in your recovery.

Hi
I was diagnosed with CIPD about 7yrs ago, before that my doctors thought I was just dealing with restless leg syndrome, carpal tunnel, rotator cuff pain in both shoulders. They prescribed kinds of meds and lots of physical therapy, but my pain continued and worsened in time, Including all my other symptoms such as excessive sleepiness, tingling & weakness, loss of balance. I have to use a cane when I walk because my balance is so horrible. If I don’t I may fall. I’ve injured my knees and broke the sides of both of my feet from falls. The neuropathy & pain in my toes & fingers has gotten worse since it began.
Besides having CIDP, I also have multiple other autoimmune diseases, Rheumatoid arthritis, Fibromyalgia, Sjogrens disease & Scleromxyedema. I receive IVIG every other week, for 3 or 4 yrs now. The IVIG seems to only help my skin. My pain level has been so bad that my pain doc decided to take out my old Neurostimulator and replace it with “Biotronik, since the Biotronik installation since March Neurostimulator was installed my pain levels have been much lower. My pain score has been (1-4 🙂

I’m in Phoenix and would like to know the name of your physician. I just got diagnosed with CIDP.

Yes, diagnosed in 2019. I’ve tried IvIG 3 times with no measurable improvement. Diet and exercise are my weapons against this crappy disease. I’ve been able to ween myself off of prednisone, it took 3 years.

Yes I’m possibly moving there in the near future and will be needing a physician to treat my CIDP

I have not been diagnosed, but am trying to get my doc to test for it. I've been trying to get this mystery illness figured out for years. I've had FM for 30 years, but this is different. I happened across a post that mentioned it, looked it up to see the symptoms, and they fit me. I have constantly high inflammation numbers, horrible pain that steals my sleep, balance issues and a wonky blood oanel,but normal eosinophils and IG numbers. How did you get your doc to test for it? Mine told me it had to be a neurologist to order the tests.

I have had it since 2015. Receive IVIG infusions every 2 weeks at home. I have a port which makes it easier. NEURO says we will see if I am in remission

My 72 yr. old husband was falling, had balance problems and very high inflammation markers. His Sed rate was 109, C-reactive protein 451, white blood cells 27. He was getting IVIG infusions 3 times a month for 4 hours at a time to treat CIDP. Didn't see any improvement, so after 3 months we saw another neurologist who , I think, for the first time really listened to my husbands history. A history that included heavy drinking since he was 17. The doctor did an EMG test among others and said that the drinking caused nerve damage in his feet and legs. The doctor told him to stop drinking and stop the infusions. It was very hard for him to break a lifetime drinking habit but he knew that he really didn't have a choice if he wanted any kind of normal life. Here we are a year later and he is much better, no falling and no balance issues...good luck !

@slkanowitz @harley22 I understand that you’re looking for a doctor in Phoenix. This website for the Genetic and Rare Disease organization should be able to help:
https://rarediseases.info.nih.gov/contact/
They also have lots of good information!
Have you asked your current doctor if they are able to make a recommendation?

New here and to the Mayo forum in general. I was first misdiagnosed in 2020 then properly diagnosed in 2021 CIDP/AMSAN. Much much rarer than CIDP alone. Bilateral weakness and sensory loss in lower legs that then spread into my arms.
Yes first bi-weekly IVIG for about 2 years and now weekly SCIG for a year. With occasional prednisone runs orally after a cold or flu or Covid. 3 years of physical therapy has helped battling strength loss.
I’m 73 and not retired. I’m a photographer/artist and do dog agility at a championship level. The treatments have given me a life albeit somewhat limited. I have maybe half the energy of a healthy person my age. Do to a bureaucratitic problem I went without treatment for 6 weeks during the switch from IVIG to SCIG so I know how much I gain from it. Life is good.