CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

My husband had a blood test called Paraneoplastic syndrome. One antibody called Voltage Gated Potassium Channel, sometimes means there is a tumor or malignancy. His scans and labs have not showed any evidence of malignancy thank God. Perhaps see if they can run that panel?

Hi, just wondering if anyone has experience with "Chronic Inflammatory Demyelinating Polyneuropathy". My husband was just given the week long infusion and we not even sure he has CIDP. It's all very upsetting.

Hi @casey1329, There is currently a discussion going on since 2019 about Chronic Inflammatory Demyelinating Polyneuropathy (CIPD).
https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/?pg=8#comment-734484
So I move your post there so you can connect with the other members talking about it.

What type of symptoms is your husband having?

I have the same understanding that it is the myelin around the nerves that is destroyed.

My husband just finished 5 days, 3 hrs a day , of infusions. He wasn't feeling bad, just weak, before the treatments and now after the treatments feels the same as before the treatments.

OMG...!!!
I am not alone, in my disease!
I was diagnosed with cidp in 2021, my symptoms began in September 2020.
I visited three hospitals, which gave me ridiculous and unhelpful diagnosis...
Cellulitis the first hospital told me, as my legs and hands were very swollen and I was having difficulty walking, always exhausted, slowly losing my dexterity...
Second hospital, assured me that it was because of my meth addiction that I could no longer walk without a walker or a cane
Physician told me, go to the hospital...
Third hospital diagnosed me as vitamin b depleted,
Bilateral Les, bulging disc, fractured spine, ( at some point in my life I broke my back and didn't know it! )
Mass effect... Still to this day I don't understand what Mass effect is
Blocked artery in my groin left leg, vein ablation with stent
Stage 3 kidney disease I'm told and 50 to 70% blockage of my carotid arteries
Bed bound for a year, living in a rural area with no transportation, as it is difficult for me to get into a vehicle
Fourth hospital trip, physician tells me to ask the hospital for a referral to a snf, skilled nursing facility.
Where I spent two years, very little to no physical therapy
And what was covid, spent most of the time locked down
Basically just wasting away!
FINALLY!!! DIAGNOSED WITH CIDP IN 2021...
Began my cidp regimen, 5 days a week once a month,
Seven or eight months
Gamerguard saved my body!!!
I went from unable to Bear any weight at all, hardly able to move myself around in a bed and my hands and fingers were curled up I can barely feed myself I had to have help getting to the toilet, getting dressed, wheelchair bound with no hope, to where I'm at now...
I left the skilled nursing facility in March of this year,
No IVIG therapy since July, still in a wheelchair, however I am able to move about on my own with a slide board and I'm able to use the toilet by myself, dress myself and prepare prepare meals if they're not too difficult a task, I am still very weak but the IVIG improved my health drastically!
I apologize for my rambling!
I am just very excited to find the support group...
I am very interested in listening to and exchanging cidp stories, experiences and diagnosis, I hope to hear from anyone...

Yes, you are not alone. It took around 4 years of going in for more testing etc. Finally as an act of desperation I enter my name and contact information into a website for a recognized Dr. who specialized in MS and ALS, I thought I had ALS. They scheduled me for 3 days of out patient testing, by the end of day 2, they informed my wife and I of the CIDP diagnosis. I am about to try Gamunex C for the 3rd time. I fell last month, dislocated my right prosthetic hip resulted in an ambulance ride. ER doctors were unable to get the hip back where it belonged. They passed me over to an orthopedic surgeon who was kind to work late that day. He put me in the OR under anesthesia and successfully got it relocated. CIDP is not a fun ride at all but, it's not cancer or heart disease! Hoping to get better results from IVIG this go round! Peace and comfort to all who suffer with this crap, it is a lousy hand of cards indeed!

Sorry, almost forgot. this Facebook group has a wonderful administrator and can be a great place to support and converse with people like us. https://www.facebook.com/groups/gbscidpwarriors

Ted - so glad you finally got an answer. I still do IvIg 2 x a month to maintain my health but I agree Gammunex saved my life!!! Best of luck to you.

Glad you like him. My experience with him was horrible. Rude, to the point of almost being abusive, literally called me an addict because I am on lyrica and a buprenorphine patch for my fibro and small fiber neuropathy pain. He told me instead I should be getting into a clinical trial to get IVIG. What planet is this guy on?? My insurance would never cover it plus there are no concrete studies showing that IVIG helps the pain of SFN. My neurologist in CO said he would never put me thru getting IVIG for that because it really is a lifestyle change you have to accept, would probably have to get a port, have possible severe side effects, but the most importantly is, my insurance would never cover it. I found him frankly to be an abusive idiot.