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Autoimmunity may underlie newly discovered painful nerve-damage disorder

Discussion in 'Health News and Research unrelated to ME/CFS' started by Andy, Nov 19, 2017.

  1. Andy

    Andy Committee Member

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    http://www.massgeneral.org/about/pressrelease.aspx?id=2172
     
    Inara, oldtimer, Allele and 13 others like this.
  2. strategist

    strategist Senior Member (Voting Rights)

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    I wonder how many here have this. This could also explain a few things such as autonomic dysfunction.
     
  3. guest001

    guest001 Guest

    Very interesting. I have no idea if I would come within this diagnostic framework. My neuro is inclined (after MRI and peripheral nerve conduction tests) to think my body-wide neuro pain is more likely to be centrally mediated... which tbh I don't disagree with. But I suspect 'this' could be 'that'? It's good to know work into pain disorder etc is ongoing. I was staggered to find how hopeless the future seems for most people with chronic neurological pain conditions when I first developed mine 6 years ago.
     
  4. Skycloud

    Skycloud Senior Member (Voting Rights)

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    @Lilpink Do you think your neurologist might be interested in discussing this research with you?
    Though I imagine it's still early days for this treatment ..
     
    Luther Blissett and guest001 like this.
  5. guest001

    guest001 Guest

    I've emailed it to him. I'd imagine he's already picked it up being old school and on top of new stuff (which sounds somewhat contradictory but I'm sure you get what I mean?). My guess is he'll say it needs replication etc...but he might be QI.
     
  6. TrixieStix

    TrixieStix Senior Member (Voting Rights)

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    This is an article that I often see suggested in online support groups that is about Small Fiber Neuropathy. It's a good resource.

    http://www.mdedge.com/ccjm/article/95083/diabetes/small-fiber-neuropathy-burning-problem

    I was diagnosed with Small Fiber Neuropathy (SFN) in September by my neurologist after my skin punch biopsies came back VERY positive. I am 38 yrs old and given how bad my small fiber nerve density is now I fear for the future as it already causes me
    serious constant pain requiring serious pain medication. It has affected my entire legs from my toes to my waist, my hands/arms, my face, and possibly my central nervous system as well. The SFN damage is so bad in my left leg that it's caused serious muscle weakness.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4348533/

    "studies have demonstrated that approximately 50 % of patients diagnosed with FM may have SFN contributing to their sensory and autonomic symptoms, indicating that the measurement of ENFD is an essential step in evaluating FM patients and excluding other treatable causes of their pain.

    The skin punch biopsy is a simple, reliable, and definitive diagnostic test that is currently available for the measurement of ENFD for these patients.

    The biopsy can be performed in any physician’s office and shipped at room temperature to one of the few specialized labs that performs this type of testing. The results give physicians an objective diagnostic tool to fulfill the diagnostic criteria for FM by excluding SFN as a cause of their patients’ pain and may allow for the detection of any underlying etiology and ultimately provide appropriate treatment and a possible cure for some of these SFN patients."
     
    oldtimer, Daisymay, Hutan and 4 others like this.
  7. oldtimer

    oldtimer Senior Member (Voting Rights)

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    I read about the immunoglobulin study in the middle of last night as I sat with my feet in a bucket of cold water for relief from burning pain. Then, coincidentally, I found this thread shortly after. What a great website this is!!

    For years I've been told I probably have ME/CFS/FM - by the few doctors who didn't immediately prescribe antidepressants:( It has never quite rung true because of the way the story started over 50 years ago when I was about 16. The wrong symptoms came first for ME/CFS, although I seem to fit the diagnosis now.

    About 30 years ago my eyes were so dry they were starting to bother me and eventually a Schirmer test put me well within the criteria for Sjogren's Syndrome. At the time, I was just told I had dry eyes and to use drops as necessary.

    Last year, my GP sent me to what's called a "physician" in Australia: someone who is supposed to look at the big picture and make sense of it. Despite no indication from the usual blood tests (not uncommon in SS), he tentatively diagnosed Sjogren's Syndrome and referred me for a scintigram, which would be proof enough. You suck on a lemon and the salivary response is measured. I didn't have the energy to go and I was managing my symptoms reasonably well so I cancelled the scintigraphy.

    Also last year, I saw a neurosurgeon about possibly having steroid injections in my spine for osteoarthritis pain and I happened to mention my burning legs and feet that were keeping me awake at night. He dismissed it as coming from my back and said no more. Knowing my symptom patterns, it didn't make sense to me.

    Now I discover that SFN is not uncommon in Sjogren's Syndrome. In Aus you can't just phone your specialist; you have to go through your GP, and only if they think it's not a waste of time. It's such a fine line to tread to not appear a hypochondriac and be dismissed. So I'm psyching up for my visit in mid March to hopefully persuade her that I should see a neurologist and have a biopsy. She has already prescribed Pregabalin for the pain. It was The Drug From Hell!
     
    Last edited: Mar 6, 2018

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