Small Fiber Neuropathy and Epstein-Barr Virus

Posted by giulia76 @giulia76, Aug 30 12:42pm

I was diagnosed with small fiber neuropathy in 2020 through skin biopsy after 8 years of a whirlwind of symptoms. I won’t bore you with that list or the tests I have done to determine, for now unsuccessfully, what is causing my small fiber neuropathy (I will be happy to, if someone wants to compare symptoms and tests performed, although I am well aware, everyone’s experience is different). I had mono when I was 19 and I also have herpes viruses that are active although I haven’t been tested. I am having a hard time getting both my neurologist and my PCP to listen to me and investigate further. Does anyone else have small fiber neuropathy because of mono or other herpes viruses? If so, how did you go about getting diagnosed? I am not saying this is the cause but I would like to determine if it is or if it is not. Thank you.

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Hello @giulia76, Welcome to Connect. I have idiopathic small fiber peripheral neuropathy and have not had mono or other herpes viruses but hopefully members with experience will join the discussion and share their experience. I did find this older article supporting your thoughts.

"Can EBV cause small fiber neuropathy?
The neurologic examination and ancillary studies were consistent with a dysautonomic small fiber neuropathy. The cerebrospinal fluid (CSF) contained both Epstein-Barr virus (EBV) DNA and antibody to EBV. This is the first report of an acute autonomic neuropathy with documented EBV infection in CSF."
— Epstein-Barr virus–associated acute autonomic neuropathy: https://pubmed.ncbi.nlm.nih.gov/8797536/

Have you done any research on a connection between small fiber neuropathy and EBV, mono or other viruses?

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Hello John, Thank you for your prompt reply and for your welcome to the group. I hope to find some solace here while sharing my experience with others who can relate. It is very lonely out there. I have just recently started to investigate this further as a client of mine who is now a friend told me she has post-herpetic neuralgia caused by the herpes viruses. She has small fiber neuropathy also and we share the same symptoms. She was diagnosed by an infectious disease specialist and is now going to a pain clinic. Thank you for sharing the article. I will add it to my pile… and I hope to hear from others as well.

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