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09-16-2014, 02:14 PM | #1 | ||
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Junior Member
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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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09-16-2014, 03:20 PM | #2 | ||
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Yes, it is a nightmare. |
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09-16-2014, 08:43 PM | #3 | |||
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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 |
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"Thanks for this!" says: | beatle (09-17-2014) |
09-16-2014, 10:39 PM | #4 | ||
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09-17-2014, 05:32 AM | #5 | ||
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Combinations of drugs may be worse than single drugs, as well. |
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09-17-2014, 09:27 AM | #6 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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"Thanks for this!" says: | hopeful (09-18-2014) |
09-17-2014, 06:15 AM | #7 | ||
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Magnate
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--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? |
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"Thanks for this!" says: | hopeful (09-18-2014) |
09-17-2014, 08:10 AM | #8 | ||
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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. |
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09-18-2014, 09:30 PM | #9 | ||
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My symptoms are a lot like yours. Mine came on real fast and are everywhere but the left side of my face. I've been tested for everything. My skin biopsy was positive. I now believe that this happened from taking Avelox. It took me six years to figure that out. Not one doctor ask if I was taking a medication when this started. If I can give any advice it is to be your own advocate. Do you own research. Look into your medical records. Push for the MRI if you think it is needed. If the doctor you have doesn't seem to be helping you find another. I wish I could say it I got better for me. It didn't but it did get more tolerable. I think there are people here that got better. Most of the time I grin and bear it. In the beginning I never thought I would be able to say that. I do meditation, pray and come here. People here understand. It is so nice just to talk to people who are going through this. Good Luck! |
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09-17-2014, 05:15 PM | #10 | ||
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Thank you |
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