Anyone been diagnosed with CIDP? It's very rare

I see it has been months since you were here, years for me. But I stopped by, saw your post, and was interested in your progress since rituximab. It has been a couple years for me since last infusion and I think I am at least not worse. Never "recovered"--still fatigue, (greatly lessening) awful nightime neuropathy in legs, still atrophied arms and other muscle loss (formerly quite muscular for an old chick), better appetite (autonomic involvement too), though hard to get weight back--that all still sounds bad but for months I was told I had rapidly progressive ALS , so I am mostly grateful. How has it been for you? Holding steady? Improved?

IVIG works for some in that they feel great for a week until the next infusion. I was doing IVIG other week for five years with no results. I finally told them I was quitting it was a waste of my two days a month. It’s so rare… is your son a child or adult? I’ve had it for 15 years. I see the first certified specialist in the world in Phoenix Arizona. I got very lucky. However even he hasn’t had many answers other than treat the symptoms. I have been on Vimpat forever & it make a difference. There are so many symptoms that are individual to each person with this disease that often doctor say they’ve not ever heard of that. And yet I find it in other groups that other people have the same things I do so it’s a crap disease. I don’t know if any of this is helpful but you can certainly hit me back

Hello @amieb, Thanks for sharing your IVIG experience for CIDP. 15 years is certainly a long time to battle with CIDP. Trying to get a diagnosis can be difficult when you have a rare condition and nothing seems to help. Do you mind sharing how you found Connect and what you were searching for?

I too have CIDP. The cause is autoimmunity. It was diagnosed by NCS, followed by about 3O blood tests. I have recently begun Ivig infusions. The jury's out. My first Dr. indicated "SFSN. Nothing can be done.
Take B-12"
Hopefully, Ivig will slow it down or possibly even stop the progression. Time will tell.
My best to you!

Unbeknownst from where it had come, it appeared one day in my email. A question that I replied to “has anyone else here been diagnosed with CIDP“. I felt obligated to reply I went there I signed in to make an account, and that’s how it started. So the answer is I have no idea how it came to me. Perhaps I searched for it one day some time ago at Mayo clinic which I do not recall. Wish I could be of more help, but any questions I’m happy to answer. Thank you

It is actually an auto immune disease, not “caused by”. There are many Auto immune diseases. I don’t say this to correct you in anyway, only to inform you. There is no known cause for CIDP and it is not curable. After I was diagnosed with CIDP I was subsequently diagnosed with Sjögren’s syndrome. Reynauld’s phenomenon, Fibromyalgia and one other that is small and in which the symptoms cross over everything else. Impossible to isolate by symptoms that I might feel. CIDP is indeed a very rare disease and is listed under the NIH as such. I have actually really found not much information (in comparison to time spent searching) other than what I responded to the first person asking if anyone else had it. Phoenix Arizona is a city of approximately 5 million people including suburbs and we do not have our own chapter of GBS/CIDP. If you can find a chapter in your local area, (chapters are listed at NIH.gov), I would most definitely try that first. The difference between GBS and CIDP is that GBS is a remitting form of this disease so it may be active for a some time and then in remission for a time, ranging from months to years. CIDP is a chronic degenerative form of the disease. ALSO an EMG Is the defining test by which to verify CIDP. If you have not had one of those I suggest you try another neurologist, with specialty in CIDP, GBS, POTS syndrome etc. I hope this is helpful and I wish you the best of luck. There’s also one key element left out of most discussions, websites etc. everywhere. I had to ask my doctor in fact exactly what did it do. If you want more information please let me know I’m happy to help.

Thank you for clarifying this.
I took a look at a site that I go to for health information and it confirms what you said.
Good to know!!
https://pubmed.ncbi.nlm.nih.gov/31072742/

I’m so happy I was helpful. Thank you for letting me know. It helped us both. You might also search for a neurologist specializing in these types of diseases. Good Luck!

Hi, I have just been diagnosed with CIDP and have started treatment. If you will join the International CIDP/GBS foundation you will find the information you need. Hope this helps. Tony

Hi @tonyinaus, Welcome to Connect. Since new members are not able to post links for a short period after they join Connect I thought I would share the link GBS/CIDP Foundation for you - https://www.gbs-cidp.org/

Do you mind sharing a little more about your treatment and how it's working for you?