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Scientific Advances in and Clinical Approaches to Small-Fiber Polyneuropathy (2019) Oaklander et al

Discussion in 'BioMedical ME/CFS Research' started by strategist, Sep 9, 2019.

  1. strategist

    strategist Senior Member (Voting Rights)

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    A review of small-fiber polyneuropathy. Interestingly, it says that evidence suggests it contributes to PEM.

    https://jamanetwork.com/journals/jamaneurology/article-abstract/2749401

     
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  2. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Do you know what a high B6 level would be?

    I didn't see a specific bench mark noted in the NIH articles below; of course this would depend on age, gender, size etc.


    About B6 from Medline Plus - NIH - U.S. National Library of Medicine: https://medlineplus.gov/druginfo/natural/934.html#Dosage

    "What dose is used?
    The following doses have been studied in scientific research:

    ADULTS

    BY MOUTH

    ......

    • For vitamin B6 deficiency: In most adults, the typical dose is 2.5-25 mg daily for three weeks then 1.5-2.5 mg per day thereafter. In women taking birth control pills, the dose is 25-30 mg per day....."
    There are several health conditions listed, and recommended doses for each.

    Odd, I can't find the RDA in this article, except for as noted above for deficiency.

    Another NIH article has the RDA for various stages of life:

    https://ods.od.nih.gov/factsheets/VitaminB6-Consumer/
     
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  4. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    According to LabCorp this is the reference range for normal levels
    Male: 5.3-46.7 µg/L; female: 2.0-32.8 µg/L
    https://www.labcorp.com/test-menu/36686/vitamin-bsub6-sub-plasma

    Even a small amount of supplementation every other day took my blood levels above the high level which would be bad for small fiber neuropathy. I wish I had never taken it - At the time I was left with the impression that vitamins were harmless and any excess would not be absorbed by the body.
     
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  5. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @wigglethemouse

    Thank you. I've seen B6 in a 250 mg strength, as just a run of the mill supplement. This level is certainly over the RDA.
     
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  6. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    I used to take this - Natures Bounty B Complex from Amazon. Vitamin B6 content 5mg, 294% % daily value. I used to take half a pill every other day and that was too much based on blood testing.
    [​IMG]
     
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  7. ProudActivist

    ProudActivist Senior Member (Voting Rights)

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    I have supplemented with B6 on and off because it’s recommended for minimising menstrual issues. I also have taken half tablets due to the dose of all the contents being so high it seems ridiculous.
     
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  8. Hutan

    Hutan Moderator Staff Member

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    Abstract
    Importance Small-fiber polyneuropathy involves preferential damage to the thinly myelinated A-delta fibers, unmyelinated C sensory fibers, or autonomic or trophic fibers. Although this condition is common, most patients still remain undiagnosed and untreated because of lagging medical and public awareness of research advances. Chronic bilateral neuropathic pain, fatigue, and nausea are cardinal symptoms that can cause disability and dependence, including pain medication dependence.

    Observations Biomarker confirmation is recommended, given the nonspecificity of symptoms. The standard test involves measuring epidermal neurite density within a 3-mm protein gene product 9.5 (PGP9.5)–immunolabeled lower-leg skin biopsy. Biopsies and autonomic function testing confirm that small-fiber neuropathy not uncommonly affects otherwise healthy children and young adults, in whom it is often associated with inflammation or dysimmunity. A recent meta-analysis concluded that small-fiber neuropathy underlies 49% of illnesses labeled as fibromyalgia.

    Initially, patients with idiopathic small-fiber disorders should be screened by medical history and blood tests for potentially treatable causes, which are identifiable in one-third to one-half of patients. Then, secondary genetic testing is particularly important for familial and childhood cases. Treatable genetic causes include Fabry disease, transthyretin and primary systemic amyloidosis, hereditary sensory autonomic neuropathy-1, and ion-channel mutations.

    Immunohistopathologic evidence suggests that small-fiber dysfunction and denervation, especially of blood vessels, contributes to diverse symptoms, including postexertional malaise, postural orthostatic tachycardia, and functional gastrointestinal distress. Preliminary evidence implicates acute or chronic autoreactivity in some cases, particularly in female patients and otherwise healthy children and young adults. Different temporal patterns akin to Guillain-Barré syndrome and chronic inflammatory demyelinating polyneuropathy have been described; here, corticosteroids and immunoglobulins, which are often efficacious for inflammatory neuropathic conditions, are increasingly considered.

    Conclusions and Relevance Because small fibers normally grow throughout life, improving contributory conditions may permit regrowth, slow progression, and prevent permanent damage. The prognosis is often hopeful for improving quality of life and sometimes for abatement or resolution, particularly in the young and otherwise healthy individuals. Examples include diabetic, infectious, toxic, genetic, and inflammatory causes. The current standard of care requires prompt diagnosis and treatment, particularly in children and young adults, to restore life trajectory. Consensus diagnostic and tracking metrics should be established to facilitate treatment trials.
     
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  9. Hutan

    Hutan Moderator Staff Member

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    Why aren't we more excited by this paper? I think lots of us get burning feet and other odd peripheral neurogenic sensations as well as Raynaud's disease, numbness and pins and needles.

    Something to watch out for:
     
  10. obeat

    obeat Senior Member (Voting Rights)

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    @Keela Too @adambeyoncelowe
    Would this paper be suitable to be viewed by NICE?
    Surely someone in the UK should start biopsies to replicate this?
     
    Last edited: Sep 30, 2019
  11. Milo

    Milo Senior Member (Voting Rights)

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    Probably because there aren’t treatments that are effective for SFPN, and that it is difficult to obtain approval for testing by knowledgeable physicians. It would be part of the ‘fishing expedition’ that health care systems want to avoid at all costs.

    And just as of late i saw physicians getting excited about mindfulness as treatment for chronic pain :grumpy:
     
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  12. Hutan

    Hutan Moderator Staff Member

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    I don't think that's always true - there are underlying known conditions that can be causing the SFPN. Finding SFPN might encourage a good look for an underlying known condition, some of which can be treated.

    But, in any case, if we can identify something tangible that isn't working properly in the body, well that alone would be something, and might progress the effort of working out what's causing the problem.

    Yeah, well. Looking at SFPN surely can't be a bigger waste of time than that.
     
  13. Milo

    Milo Senior Member (Voting Rights)

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    Agreed. Simply replicating the study would help a lot, but who would do that?
     
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  14. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Probably not yet. NICE isn't very interested in theories and this is still at that hypothetical stage. NICE wouldn't do replication either.

    If this becomes more established, then it could be considered either as an exclusionary diagnosis or as a screening test, depending on whether SFPN is found to be distinct from, a complication of or a possible cause of/contributor to ME.

    Then treatments, if likewise proven, could also be recommended for this feature.
     
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