Peripheral Neuropathy, Atypical
 

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!

.

Thinking of you. Mine started with n/t in hands and feet, then elbows, knees, then face, private area, etc. I am still doing blood tests and now finally a brain MRI. I have zaps too but not quite as strong.

Yes, it is a nightmare. :hug:

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:)

Mine happened after surgery. Any hope there? What are you thinking this is?

Have you checked into the anesthetics, antibiotics etc. that you took during surgery? There are many agents that can cause problems, if you have a predisposition (for example-N12 deficiency and nitrous)
Combinations of drugs may be worse than single drugs, as well.

And--
 

--while there are certainly cases of neuropathy that involve more than the extremities, and these are certainly more common with acute autoimmune and/or toxic neuropathies, that degree of bodily involvement would also suggest an attempt to test for disorders of the central nervous system (brain and spinal cord), particularly for demyelinating conditions such as multiple sclerosis and acute disseminated encephalomyelitis (ADEM).

Have you had contrast MRI's of brain and cervical spine?

A week ago I had c-spine and thoracic MRIs (with and without contrast) because at about the same time as this neuropathy, I started experiencing thoracic back and neck pain. My back is extremely point tender on my spine, it's painful just to lay down on my bed at night, even to sit against the back of a chair. I've been doing physical therapy and tried chiropractic care, but nothing has helped. My neuro doc agreed that these MRIs would be useful both for my unexplainable upper/mid back pain (in a 24 y/o otherwise healthy female) AND for this unexplained neuropathy. The only thing my MRI said was "approximately 3 mm of cerebellar tonsillar ectopia, which is not definitely low-lying. No crowding of the foramen magnum or posterior fossa." but the conclusion on the report was "normal MRI". Even such a mild displacement like that would probably be asymptomatic I think? I think >5mm is considered Chiari. I just have the report online, didn't have a follow up with my doc yet.

As I mentioned, I had diplopia on my visual fields exam, but is making me concerned about the possibility of MS. My friend said that you can have MS for years before lesions show up on MRI, but I don't know if that's true. I just get this feeling that there's more to what's going on than just a peripheral neuropathy. I'm worried it's only getting worse.

No MRI of brain done, 1 of my doc's said it was not indicated and my other doc never mentioned the idea of it.

~MEDICATIONS~~ That May Cause Peripheral Neuropathy

Doc

I can very much relate to your post (except the Anti-Sulfatide Antibody). In my experience, they eventually cease testing, shrug their shoulders and your dx is Ideopathic Peripheral Neuropathy. They write the Gabapentin prescription and send you on your way. When you complain about the SE's, they substitute Lyrica of which the SE's are 10x worse and you beg to have the Gabapentin back. They comply.

Sorry for the bad news but there is no bright side to Neuropathy. :confused:

Aussie99
 

Aussie 99, could you also have hope if it is surgery induced? Started with everything a couple of weeks after surgery, and now 11 weeks later on Lyrica after Neurotin(was on about a month) could not touch the burning pain.

Thank you