Anyone been diagnosed with CIDP? It's very rare

Thank you! I have a neuro consult coming up.

I have a friend with both - not unusual.

Yes, diagnosed in 2019, took nearly 4 years for the symptoms to present all together to allow a confirmed diagnosis. There's a Facebook page that many of us belong to that is very helpful. https://www.facebook.com/groups/gbscidpwarriors

I was diagnosed in 2019 by way of spinal tap and emg.
I am on IVIG which has helped me tremendously. I am able to walk without assistance and almost have full use of my hands.
I wish you the best on your healing journey

I was diagnosed with CIDP in 2014. I was I’ll 13 months and was glad to finally get a diagnosis.

Hi 👋 I am 75. In 2019 Oct. I had sudden difficulties in standing , balancing and walking . I had to take support to walk very slowly. Tingles in feet , sensory deficiencies in feet and palms persisted. In next few days I had Bell’s palsy compounding the problems. To combat extreme weakness in limbs I was infused B12 and Sodium along with Corticosteroids. This restored body functions for few days . Then I again slipped in to external support and dependency for my daily routines. I was again put on a mild course of oral medication of steroids (Prednisolone) and multivitamin supplements with lots of physiotherapy and meditation . This helped in slow recovery of body functions . The most recurring symptoms have been loss of sleep, appetite, and body balance. I was lucky to get very nutritious food , good physiotherapist, and a dedicated Neuro Physician in very close proximity.
Now I drive my two wheeler and car though not frequently and in non peak traffic conditions. I am yet to get my normal walk which I am hoping to get gradually.
The sponge feeling below feet and stiffness in feet is still significant. I am managing it with a reconciliatory mind.
I must thank the time that I had all this during Corona period which helped me mentally accepting home confinement.

Thank you for your post and your picture. Indeed this looks and feels very painful. Speedy recovery via diet adjustments and mineral/vitamins which can improve the situation.

My husband, age 71, was told he had CIDP and given infusions which didn't seem to have any effect. He went to another neurologist who diagnosed, Parkinson's and put him on medication but again no improvement with his balance and falling. A third neurologist said he didn't know what the problem was. Finally, a fourth neurologist diagnosed distal sensory axonal polyneuropathy caused by alcohol abuse. My husband has now been sober for 8 months and doing much better. What amazed me was that all 4 neurologist ran the same tests and took the same personal history and yet came up with 4 different results!

@foxauthor good afternoon.
I was diagnosed back in 2010 when I lived in Florida. I have seen many doctors, have several other conditions but my Neurologist said no but after years I have progressed from feet up and hands up. I am on Hizentra Sq infusion each week. Getting ready to do my weekly.
Few doctors understand CIDP. I research on my own, my support group stopped. They helped a lot.

I am as diagnosed in 2022 with CIDP by one neurologist and then a second opinion said I did not have it. I did three IVIG infusions that did not help. I have neuropathy all over my body that does not go away. I struggle to drive and do things around the house. Very frustrated with neurologists and rheumatologist. They all say something different. I am a 10 year Cancer survivor and I hate to think this is going to take me down. God healed me once I know he can do it again. He is the only one that knows what is causing this condition.