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.