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Small Fibre Peripheral Neuropathy may underlie many chronic multisystem syndromes

Discussion in 'Other Health News and Research' started by Marco, Dec 22, 2014.

  1. Marco

    Marco Grrrrrrr!

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    This is the full text of an oral presentation so not much more than an abstract but very interesting especially as regards children who were not likely to be exposed to the usual causes of peripheral neuropathy (diabetes, infections, cancer or toxins) implicating autoimmunity.


    Small-fiber polyneuropathy (SFPN), a common underlying diagnosis in syndromes involving unexplained chronic pain and multi-system symptoms

    "Among adults with fibromyalgia, 41% of skin biopsies from subjects with fibromyalgia vs. 3% of biopsies from controls were diagnostic for SFPN, and symptom and examination scores were higher in fibromyalgia subjects than in controls (all P ≤ 0.001) [10]. All fibromyalgia patients diagnosed with SFPN then had blood tests for all known causes [8]. None had diabetes but 62% had test-results consistent with dysimmunity, and some had genetic causes [10]. Other laboratories have now also linked fibromyalgia to SFPN"

    (bolding added)

    http://www.molecularpain.com/content/10/S1/O12

    Although mentioned as an example of a syndrome involving unexplained chronic widespread pain and mutisystem symptoms they didn't include a ME/CFS cohort. But the implication is that SFPN can cause these symptoms (including autonomic dysfunction) in older adults, that SFPN is found in a high proportion of fibromyalgia patients and in young people with chronic multisystem symptoms the presence of SFPN can't be explained by the usual causes.

    I would really like to see objective testing for SFPN of a ME/CFS cohort :

    http://www.cortjohnson.org/blog/201...treatment-widespread-pain-fibromyalgia-mecfs/
     
  2. adreno

    adreno PR activist

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    Isn't this a downstream effect?
     
  3. alex3619

    alex3619 Senior Member

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    Cause or effect? Otherwise, I think its very important, but then again I am biased as I probably have SFPN. I think we have already had one study in CFS, a few years ago?
     
    Marco likes this.
  4. lansbergen

    lansbergen Senior Member

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    I think it is

    I think effect
     
  5. Marco

    Marco Grrrrrrr!

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    Neuropathy affecting autonomic nerves could explain a lot.
     
  6. Marco

    Marco Grrrrrrr!

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    Indeed. But there's a finite list of known causes of SFPN and in diabetes for example it isn't the problem of regulating blood sugar but the neuropathy which is responsible for many of the autonomic/cognitive symptoms.
     
  7. msf

    msf Senior Member

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    I think talking about cause and effect isn't that useful actually, since something can be both cause and effect of two different parts of a complex disease. I think thinking about things in terms of a trigger is more likely to give us a better understanding of the etiology of ME. Of course, understanding cause and effect might help in coming up with symptomatic treatments, but it seems to me that quite a lot of theories of ME have decided that something, NO2, say, is the cause, without thinking about how this could have acted as a trigger. For people like myself, who were fine one day, and then ill from then on, these kind of explanations seem to miss the point somewhat (in terms of disease etiology, anyway).

    I would also like to point out that it's a bit strange to mention something that can be the product of several things, and then, because it isn't the product of any of those things in a particular case, to assume that it is the cause in that case. It seems much more likely to me that it is the product of something that they don't yet recognise as a cause.

    Hmm, I'm pretty sure I could have said that better, but I haven't slept much for the last couple of days so I'll just have to hope that I made my point.
     
    picante likes this.
  8. Marco

    Marco Grrrrrrr!

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    Made sense to me (somewhat worryingly :))

    It this particular paper I don't think it was a case of excluding possible causes of SFPN and then concluding that SFPN was the cause of the multisystem symptoms in those children - more the case that they excluded other causes and suggest that autoimmunity may be causing SFPN and the symptoms.

    If that makes sense?
     
  9. msf

    msf Senior Member

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    Ah, yes, I read that but then immediately forgot it...but then we get into auto-immunity and what the triggers for that are - perhaps we should add this to the thread on mono, Prof. Edwards might have something to say about how auto-immunity might cause this.
     
  10. PNR2008

    PNR2008 Senior Member

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    My skin biopsy said no to SPN but I have all the signs, so now my Dr, wants a TST?????

    My legs still have red marks from the skin punches they did 2 months ago. Sometimes this is just another bother that does nothing for me.
     
    melamine likes this.
  11. duncan

    duncan Senior Member

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    The canaries in the cold mine for Lyme often are children, since it is they that more frequently play in the tall grasses and underbrush to which ticks gravitate. The text of this study speaks to seronegative Lyme syndrome, but one has to wonder about straight-up Lyme that just gets missed or under-treated.

    Also, if I am reading this right, the authors are speculating SFPN is a disorder in and of itself? Not an effect? The concept of it not being a downstream effect is foreign to me. Maybe I am reading that wrong. Certainly Lyme is widely acknowledged as a generator of all sorts of peripheral neuropathies.
     
  12. Marco

    Marco Grrrrrrr!

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    I don't think so. In fibro studies from the same people they seemed to imply that the SFPN was causing the widespread pain and by implication fibromyalgia was a misdiagnosis although I don't think they ruled out the possibility that peripheral neuropathy may be part of the process that leads to fibro (the 50% without neuropathy may just not have developed it yet). If they were then able to exclude the usual causes of SFPN in those patients testing positive then some other (unknown) factor would be implicated.
     
  13. waiting

    waiting Senior Member

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    Your Dr wants a TST -- what is that?
     
  14. lansbergen

    lansbergen Senior Member

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    tuberculin skin test ?
     
  15. PNR2008

    PNR2008 Senior Member

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    Look up medical terms for TST, there's a lot of them but a few that apply to SFN. I haven't talk to my doc to find out which one he wants.

    I'll wait after the holidays to call him. Then I'll decide if I want to go ahead with it.
     
  16. melamine

    melamine Senior Member

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    My late-post-EBV CFIDS/ME peripheral neuropathy began insidiously as a result of toxicity, I believe. Recent experiences with amoxicillin + NSAID or similar painkiller + dental anesthetics is leading me to focus on the antibiotic in particular, and especially when other drugs were also involved. While there was a noticeable increase and progression in the neuropathy after a third major infection, in which no antibiotic was used, I am seeing a pattern of association with those drugs over a period of about 15 years, and an escalation in after-effects, likely due to pre-existing damage from the previous episodes.

    Up until my recently I was more focused on other potential toxic exposures, like mercury and paint thinners, and no doubt they've had an effect.

    I was talked into a skin biopsy, knowing it was not the appropriate kind for the kind of neuropathy I was experiencing, which I felt certain required a sural nerve or muscle biopsy. True to expectation, it was normal.
     
    PNR2008 likes this.

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