Quote:
Originally Posted by JHop11
I am writing this to see if anyone can relate or have advice on what to do.
I started experiencing "peripheral neuropathy" just over a year ago, after I had a viral infection. It started in my arms, then included my feet, the backs of my legs.... months later.... the fronts of my legs, my groin... months later... my chest, my back.... and now I'm experiencing zapping, lightning pains on my sides, they radiate around my ribs. I still have stinging sensations in the rest of my body. I also get crawling feelings in my legs, where it feels like prickly spiders crawling on my legs. For the past 2 months, I have been getting shock/zaps that go down the length of my spine, which is the most excruciating pains I've ever felt, and these are typically at night. I also get stinging that goes horizontally in my back.
I've had normal neuro exams every visit, until my last visit, I had double vision on my eye exam (visual fields) when looking upwards & diagonally upwards to either side. I never had this before.
I've had almost every blood test imaginable. The only blood test that ever came back positive was an Anti-Sulfatide Antibody which wasn't really "positive" but my doctor said was "abnormal". I also had a skin punch Bx that was negative for small fiber neuropathy. I have tried nearly every drug it feels like, and the symptoms just aren't getting any better. I recently had a spine MRI with/without contrast so we are waiting for that to come back with results.
I've never heard of neuropathy in your back and ribs and chest, so I'm wondering if anyone has experienced this?
Thank you kindly!
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Sorry to hear you are not well. There is a phenomenon of post viral or post infectious small fiber neuropathy. Its selective to the small nerves through a process of molecular mimicry. It usually happens after an illness such as flu bug,virus, gastritis, or other infection.
If eyes are involved it could also be a Miller Fisher Syndrome variant.
The good news is that people who have had this have posted recovery over time. So there is much much hope. Although it can be a bit slow... and often times things may seem to be getting worse before they actually get better.
The only thing I want to remind you is to REQUEST "copies of ALL your lab reports,tests,and neurological exams". I have heard too many times doctors saying tests were within normal range but the test was actually ABNORMAL for that patient.
Try to get a copy of your Skin Punch Biopsy and MRI radiology report. You may have to get a 2nd opinion. I find it unusual that you have all these symptoms but you have a normal skin punch biopsy. This does sound like small fiber to me. I am not a doctor but I too have all these symptoms. Mine started during a long bout of Gastritis with H. Pylori infection.
Wishing you good health.
Aussie
