CIDP Support Group

Thank you!

I also had no improvement after 8 mos of IVIG infusions.
They did nothing for me at all.
Very frustrating to say the least!

Hi Everyone.
I was diagnosed with CIDP in April 2023. I had GBS in 1982.
My CIDP went all the way to wheelchair bound. My adult chikdren had to do everything for me. I had a video neurologist appt from CA, I was in NM. Then my kids took me to CA. Since I was paraylized and rode in a car a long distance, I had a pulmonary embolizm. That got me in the Hosp fast. Since I was on hepron already when the Dr came in the next day he did many tests, but no LP. I got to where my left eye wouldn't move.
Dr put me on 60 mg of prednisone then IVIG and then Cell Cept. Only did the 1 round of IVIG weaned off of pred in 6 months. Still on Cell Cept. Also am on 1200 mg gabapentin 3x a day.
I am doing well. Fear of falling is real. I do get fatigued. My sleep is off cyle. Gained wieght lost muscle.
Very Blessed to alive.
Thank you. KATHY

Numbness, and lack of sensation in outer limbs and extreme fatigue. Some variants have a lot of pain also.
Mine started with an odd virus which caused daily migraines for two months then the numbness in the lower legs. When it spread the the lower arms and hands my neurologist had me hospitalized. But they were looking for a spinal issue or MS. A neurologist working the floors over Christmas was looking at my case and disagreed and did a spinal tap and nerve conduction test and found CIDP- further tests showed the Acute Motor Sensory Varient. I will have it for life.

Hi everyone,
I’m based in Ireland and was diagnosed with Anti-Neurofascin-155 antibody–positive CIDP (NF155+) after a very severe onset in late 2021. I had significant tremors, weakness, balance loss, and a long hospital stay. After treatment (including Rituximab in 2023–2024), I’ve been in remission since early 2025.

I still experience intentional hand tremors, balance sensitivity, fatigue, sensory overload, and some residual autonomic issues—especially after viral infections or stressful periods.

NF155+ is rare, and I would really like to connect with anyone who:
• has NF155+ (or other paranodal/nodopathy autoimmune neuropathies)
• has been through a similar recovery path
• lives in Ireland or nearby (but international connections also very welcome)
• can share experiences, long-term outcomes, or coping strategies

It would really help to hear from others going through something similar. Thanks so much

Welcome @davidjs, Another member @russbuettner mentioned having NF155 CIDP in another discussion here and may have some experience to share with you - https://connect.mayoclinic.org/comment/1184751/.

Have you seen the Shining Through CIDP site? - https://www.shiningthroughcidp.com/

@davidjs Hi, my husband who is 37,had a 5 day fever with severe tonsils & chest congestion in April 2025. Post which the ent checked his tongue in may 2025 to find fasciculations - the nuro did contrast ct of brain,spine but didnt see anything. the myasthenia gravis, musk antibody & other nuro bloodwork like GAD 65 came negative repeatedly. He was unable to speak & had very restricted tongue movement when i took him to ENT in may 2025, its only in march 2026 that the doctors gave him one round of ivig as a wild shot when a lot of neurologists had said he mostly had a bulbar onset MND. They even put him on rulvitor for a week, post which i asked him to stop it as he was super drowsy the whole day. The ivig worked amazingly on him & his gag reflex came back & his swallowing & tongue movement improved a little. And only now in april 2026 a new nuro that we went to though about testing him for NF 140/155/186 & thank fully his NF 140 is positive - though the sub class result is still pending.
Just yesterday his round 2 of 5 day ivig has finished along with the 2 vials of Rituximab in iv.
I showed him to some of the most renowned neurologists across the country in the last 1 year & only now did a doctor for teh first time decide to test him on NF. It has made me realize how rare is it tested for & how the emg can show it as an anterior horn cell diseases when the person actually may be NF positive

@tanvisingh2007

Hi, positive NFL test shows injury or degenerative changes to the neurons, but it is disease non-specific. No treatment plan can be selected based on this test alone. Other tests are needed to confirm the diagnosis.
Looks like your husband is getting the right treatment of ivig + Rituximab. Hopefully, it will work for him. Please keep posting his progress after treatment.

Here is a link to Copilot search for NFL Test:
https://www.bing.com/search