I’ve been experiencing neuropathy throughout my entire body since 2022. My B12 was measured at 270pg, and I had taken pantoprazole for several years. I’ve been on B12, folate, and other supplements since May, but I haven’t seen any improvement yet. I’m starting to suspect an autoimmune issue like seronegative Sjögren’s because of my dry eyes, even though my inflammatory markers are normal. Usually, I hear about B12 neuropathy affecting just the hands and feet and improving with supplements. I’m getting desperate because it’s in 90% of my body now, and taking supplements actually seems to increase the pain. I’m not sure where else to look for help.
How are you getting your B12? Is it through oral pills or injections?
Has a neurologist actually diagnosed this as neuropathy? It might be something else. They can perform an EMG to confirm if it’s neuropathy, which would help you find the right diagnosis if it isn’t.
I’m in that situation. I’ve had full-body neuropathy since 2017, starting on my scalp and chest and moving everywhere. I’ve been doing B12 shots three times a week for 10 months with no change. I also suspected Sjögren’s, but my markers and SFN biopsies came back negative. I’m in pain management now just to function. It’s incredibly painful.
That’s not actually the case. The longer you’ve been deficient, the more severe the symptoms can be and the longer they take to heal. Since your B12 was low, I’d personally keep up with injections every other day and cofactors; you might also try Nervala (i order from here)for extra nerve system support.
It’s affecting my whole body too, if that helps. It started in my head, then moved to my chest, then arms, and finally my legs.
My neuropathy is full-body as well. I’ve been told it could be B12, a severe iron deficiency, a tick-borne illness, or postpartum-related. It’s been 5 months, and after B12 shots, iron infusions, and doxycycline, I still have it, but it has improved a bit. It’s still a major problem, but… it’s better.