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Connection to Epstein Barr Virus or PN as autoimmune disease
I have read about Epstein Barr Virus and some symptoms seem similar to PN, ie pins and needles in feet or hands. Any info about PN being triggered by surgery or EBV? I had a successful shoulder replacement but was unfortunately left with "nerve damage" in my hand which seems to be morphing into PN. Primary doctors are pretty useless in the UK. Is it reasonable to request a blood test for EBV antibodies? This site is the only help I have been able to get and without it I would be even more distressed about my condition. Thank you for any information.
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Yes, I did tested positive but mine is autoimmune lupus, Hashimotos Sjogrens.
You need to see a neuromuscular neurologist in the UK not a PCP they do not specialize in nerves.
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1 ReactionThere is another discussion that you might find helpful here -
Does EBV cause Neurological Symptoms?: https://connect.mayoclinic.org/discussion/does-ebv-cause-neurological-symptoms/
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1 ReactionI hope you get the help you want. So far, I have not had luck with this site.
Having said that: I was tested for ebv antibodies and they did it 3 times. If it's high all 3 times they claim you have chronic ebv.
But doctors are useless unless you break an arm, lol.
It sounds like they struck a nerve while doing surgery on your shoulder. I had surgery on my jaw and my chin became permanently numb.
Thank you so much.
In order to have autoimmune neuropathy your ESR- sed rate, CRP ( c- reactive protein) and your Ana must be elevated consistently. Mine is elevated every time they draw my labs. They are the autoimmune inflammatory markers showing constant inflammation. It took the rheumatologist over 20 years to find mine. I felt so bad I couldn’t move. I was seeing a new rheumatologist. I had been crying my husband flew in from Germany to take care of me. We flew back he had to bath me and everything. Finally after my labs started coming back we finally knew what was wrong. Everything was flaring up at once. After, two months. I could finally start moving around and could shower by myself. It has happened once before where I had a flare and couldn’t walk. The Epstein Barr Virus can cause neuropathy. It is the herpes virus aka cold sores or mono the kissing virus. If you get cold sores you have the Epstein Barr Virus. To test positive you have to have an active cold sores on your lips or other parts of your body.
I have problems with hives all of a sudden on my hands. I have to take lots of Benadryl
If you have had a major surgery it can be triggered. Some medications can trigger
https://www.foundationforpn.org/
no, ebv is not herpes on your lips. It is similar but no, not the same. Mono is ebv though. Chronic ebv is essentially recurring mono.
Good info and it’s not just cold sores on the lips that indicate the virus. The basic virus is really the herpes simplex virus and other viruses mutate from there. I only found out about herpes when I got shingles. Eventually, I found a doctor who is able to test me for the type of virus that was manifesting. It seems like everyone has herpes of some sort or another, but your body dictates which one dominates and manifests. Overtime I learned the indications for a herpes outbreak (in my body at least) and that involved the feeling of itchiness/ants, crawling up and down my back when the virus was starting to get active. I now take antiviral supplements which keep the flare ups at bay.
I take 1 gram valtrex a day. During flares two a day.
I guess I am the "exception that proves the rule". I have PN without ellivated sed rate or pos ana. My CRP is just barely positive. My small fiber biopsy was very positive and MRI indicated that balance poblems were coming from Lumbar spine where autonomic nersves leave the spine. (Small fiber influence large fiber.) I do have Sjogren's. My sed rate was high when my Crohn's was active. It seems to be in remisson now.