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Suspected auto-immune or immune mediated Small Fibre neuropathy
Hi everyone,
I'm reaching out to see if anyone here has experienced a similar journey to mine and can offer some insight or hope.
I’m 39 years old and was diagnosed and treated for hypogammaglobulinemia ( common immune deficieny) for over 20 years. For most of that time, I was on monthly IVIG (35g) which helped prevent infections and kept things stable. However, I had to pause IVIG treatments for about 6 months. That’s when things changed.
Around late May 2025, I started noticing a very mild tingling in my hands at night. It was barely noticeable, but by June 19, the symptoms escalated rapidly. All of a sudden both my hands went numb, zaps, and what felt like sensory overload or fatigue with movement. I was hospitalized for investigation.
Since then, I’ve experienced:
Burning, tingling, zapping sensations, mainly in my hands. do get these sometimes in my feet but more prevalent in my hands especially the palms of my hands...
Shooting pains in fingers and occasional arm shocks
numbness is somewhatt persistent now but fluctuates
MRI, EMG/NCS, and blood work showed no clear autoimmune markers. My neurologist says there’s no solid evidence for small fiber neuropathy, but it remains suspected due to the symptoms.
Unfortunately, in Malta, where I live, there’s no access to skin biopsy or thermal threshold testing. I’ve contacted a London neurologist to explore this further.
IVIG has now been restarted (35g monthly), but I did not receive a loading dose—just resumed maintenance. I had about 3–4 days of symptom relief after the first re-dose, but then the symptoms came back.
I’ve read that small fiber neuropathy pain can be chronic, but also that some people adapt or find their symptoms stabilize or improve. Right now, it feels hard to believe that, and I’m trying to understand what to expect long-term.
I am gluten intollerant ( mother is coeliac). in those 6 months without getting ivig, i did consume gluten related prodcuts ( possible trigger?)
Since then im taking b12 1000 vitamins, fish oil and started pregabalin one month ago as well
So I’m here to ask:
Has anyone else had a similar onset of symptoms after stopping or missing IVIG?
Has anyone experienced burning/zapping/tightness that gets worse with use and improves with rest?
Did your symptoms ever calm down over time, or did you find a treatment that helped?
Can your body/brain get used to this pain or desensitize in any way?
I think that I might need to visit a specialised Dr who specialises in auto immunity and small fibre neuroapthies... can you suggest someone in Europe?
I’m feeling overwhelmed and unsure of the road ahead, especially as this condition has turned my life upside down. Any shared experiences, advice, or encouragement would mean a lot right now.
Thank you so much in advance.
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Hello @stevep123, Welcome to Connect. You are definitely not alone. It can be overwhelming with your life turned upside down. I'm hoping that you can connect with other members with similar experience and find some relief. I only have numbness with my idiopathic small fiber peripheral neuropathy and have no experience with IVIG treatments. While you wait for members with experience to respond, I did a search of Connect for "stopping IVIG" and thought you might like to scan through the discussions and comments here - https://connect.mayoclinic.org/search/?search=stopping+IVIG.
There is a discussion on a topic from one of your questions - Can your body/brain get used to this pain or desensitize in any way?, that might be helpful:
-- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
The Foundation for Peripheral Neuropathy also might be a good resource for you. I did see an article and a list of International doctors (neurologists) that include some in Europe and other countries.
-- Living with Neuropathy: Meditation: https://www.foundationforpn.org/5502-2/
-- Find a Doctor (Select International in the Filter by State field): https://www.foundationforpn.org/find-a-doctor/
-- Living Well with Neuropathy: https://www.foundationforpn.org/living-well/
Have you looked into any complementary or alternative therapies for neuropathy?
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2 ReactionsCeliac disease, though not true for everyone, can be a cause of peripheral neuropathy. I took a blood test and found out that I am gluten intolerant. Since eliminating gluten, I have experienced less tingling in both arms and feet. I was having problems breathing and was waking up with night sweats. That,too, has stopped as I now stay on a gluten-free diet. I try to eat whole foods--not much processed--and have lots of greens. Sugar has also been cut back on as it can cause inflammation. I also had muscle wasting and weight loss. Very hard to rebuild muscle but I did gain a few pounds after ditching gluten--an accomplishment. You may not be stuck with this pain You should do a blood test for celiac disease. It can run in families. And I do hope you can find help!
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1 ReactionI have small fiber neuropathy, diagnosed last October by biopsy. It showed severe small fiber neuropathy and I have it seemingly everywhere. After a year, it seems to have calmed down. I live with a lot of uncertainty; however, I think it's important to tell you that I am much better. No autoimmune cause has been found yet, though I already have Raynaud's and Meniere's. I am off medications for now and have some days where I feel almost normal. I hope you can find someone to do the biopsy. A kit could be obtained by a lab and performed by a doctor where you are. It does take at least 3 weeks for results.
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1 ReactionIt’s so complicated and always personal to the individual. I found exercise used to manage it quite well but a Denosumab injection for bone density caused a major flare up which hasn’t settled. I found Taurine helped at first but then tailed off, alpha lipoic acid and PEA are apparently used successfully in Germany and Italy respectively, but seem to give me headaches/ migraine. I’ll keep trying these though. Good luck with your search though.