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I’ve been living with unexplained neuropathy (sudden onset) for 5 years and 3 days, I “coincidentally “ was hospitalized at the time of onset for UTI/kidney infection. Neuropathy has been confirmed by several nerve conduction studies. I suddenly lost legs and arms, was in wheelchair 6 months but now can use walker. Not a single diagnostic test other than bloodwork (all negative) was done. Even Duke and MUSC specialists I went to said “let’s wait & see”. I could not have an MRI due to an ICD, but had it replaced with an MRI friendly on 6 months ago. My new neurologist doesn’t believe an MRI would be useful, but after begging and pushing, I finally have a sural nerve biopsy scheduled. It’s been hard being put out to pasture at 51 yrs old, and turning from an athlete to disabled without diagnostic attempts to help. Anyway, my biopsy questions: 1) what types of things can be discovered with this test? And 2) After “watching and waiting” this unexplained thing deteriorate me, would it be too late to help me if we did find a cause? (Like a post infection disorder?). Thanks for any guidance
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@dbeshears1 Hello and welcome to Connect. I don't have neuropathy myself, but I found a study that explains the different diagnoses that can come from a sural nerve biopsy. There are many types of neuropathy, and some are inflammatory or autoimmune disorders.
This describes a sural nerve biopsy. https://www.ncbi.nlm.nih.gov/books/NBK551645/
Here is a link to the study that evaluates possible diagnoses, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6884026/
Sometimes it takes years to figure something out as to a cause. Perhaps a functional medicine doctor could help because they will look at the functioning of the body on a biochemical level and the normal pathways for detoxification. For example, I developed an autoimmune thyroid condition that my functional medicine doctor linked to old silver amalgam dental fillings. After I had those replaced by a biological dentist, my thyroid function improved immediately, and the antibodies against the thyroid dropped. I also had health issues that were caused by failing teeth with very old root canals that were spreading infection into my jaw bone, and I made the decision to remove them and replace the teeth with bio-compatible Zirconium dental implants and teeth. There is no metal in those, and my body does not like having metal in it. I also had improvement in my asthma after this, that is until I broke an ankle and needed metal plates to fix it. I just had plates and screws removed from my ankle a couple weeks ago. I broke my ankle last year and the plates were placed there in surgery, but 6 months later, I had developed chronic hives and pain, and my ankle would get warm. Since having them removed, my asthma improved immediately, and the bone pain stopped.
You can search for a functional medicine specialist with the American Academy of Environmental Medicine. On this website, there is a provider search button in the top right corner. https://www.aaemonline.org/
Neuropathy can be tricky. Some kinds can be improved and some cannot. What you can do as a patient is to make changes that improve your health with diet and lifestyle changes. Sometimes getting your body detoxing properly and super nutrition can help a lot. When you get the body fine tuned with better functioning, you give yourself more ability to heal. This is something only you can do; while your doctor might be looking to treat symptoms with pharmaceuticals. Functional medicine doctors try to prevent the problems.
One of our mentors, @johnbishop may be able to give some more insights into neuropathy. I know from my own experience, that the choices I have made have changed my medical destiny. Do you have other conditions with health history that could be contributing to increasing inflammation in the body? The way to better health is by reducing inflammation with lifestyle choices.
I also wanted to add a note. Have your doctors done imaging of your entire spine? I will tell you why I am asking. I am a spine surgery patient and I had spinal cord compression in my neck at C5/C6. That affected my entire body and I had pain everywhere including my legs and I walked with an uneven gait. A lot of non-Mayo surgeons missed that connection which is why I came to Mayo. Here is a study that I found right after a non-Mayo surgeon dismissed me that describes "funicular pain".
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/From this study, https://journals.lww.com/spinejournal/Abstract/1999/06150/Sciatica_Caused_by_Cervical_and_Thoracic_Spinal.17.aspx
"Leg pain resembling sciatica can be caused by cord compression at the cervical and thoracic level. Thoracic kyphosis may be a causative factor in sciatica, in addition to spinal cord tumor and disc herniation, which have been reported previously."
There is no test to confirm funicular pain. According to one of the sural nerve biopsy literature links that I posted, a patient should exhaust all their options before doing the biopsy. The only real confirmation of funicular pain is that spine decompression surgery fixes it and proves it existed. That was my experience too. Here is the literature which you may want to show to your neurologist. If your doctor does not consider this, and it hasn't been ruled out, you may want to get a second opinion.