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Dorsal Root Ganglionitis - infection of inflammation?

Discussion in 'General ME/CFS Discussion' started by cfsStevew, Jan 24, 2015.

  1. cfsStevew

    cfsStevew

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    Im interested to understand more about this physical feature found in Lynn Gilderdale and Sophie Mirza. Its odd considering its significance in those two cases being the most serious in the UK - having a physiological validation - yet I cannot find much information about it...

    In Voices from the Shadows Kay Gilderdale says the DRG was a result of infection, whereas I believe in Sophie Mirza case the DRG was put down to inflammation?

    What do we know about this - surely it is the most compelling locus for the most severe aspects of ME - and how patients become paralysed?
     
  2. charles shepherd

    charles shepherd Senior Member

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    I assume that you are aware of the report that the UK post mortem research group published in the The Journal of Neurological Sciences.

    This describes some of the more interesting findings, including dorsal root ganglionitis, that have been found in a few cases involving people with ME/CFS.

    These are people who have often died in tragic ciurcumstances and where relatives have given permission for post-mortem tissue to be used for research purposes.

    An abstract is provided below.

    The dorsal root ganglia (DRG) are, in very simple terms, minute bundles of nerve cell bodies that lie outside the spinal cord - and so form part of the peripheral nervous system.

    So inflammation of the DRG is not the same as myelitis in MEncephalomyelitis. Myelitis refers to inflammation of the spinal cord.

    The DRG appear to be involved in the transmission of sensory information and possibly pain as well, and so disturbances in function may result in sensory disturbances and pain.

    Dorsal root ganglionitis, inflammation of the DRG, can be caused by an infection such as chickenpox.

    But it can also be associated with specific conditions such as Sjogren's Syndrome - which has some interesting overlaps with ME/CFS, including debilitating fatigue.

    In the case of SS, the presence of DRG-itis has been linked to the sensory neuropathy that occurs.

    As far as ME/CFS is concerned, we just don't know at this stage whether DRG-itis is part of the disease process, or whether it could just be the result of a triggering infection such as herpes.

    As we do more post mortems, which is happening despite the lack of a formal post-mortem facility, the position may become more clear.

    ABSTRACT:

    Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases

    DG O’Donovan1, 2, T Harrower3, S Cader2, LJ Findley2, C Shepherd4, A Chaudhuri2
    1Addenbrooke’s Hospital Cambridge UK
    2Queen’s Hospital Romford Essex UK
    3Royal Devon & Exeter Hospitals UK
    4Honorary Medical Advisor to ME Association UK

    Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a disorder characterised by chronic exercise induced fatigue, cognitive dysfunction, sensory disturbances and often pain. The aetiology and pathogenesis are not understood.

    We report the post mortem pathology of four cases of CFS diagnosed by specialists.

    The causes of death were all unnatural and included: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning.

    Selected portions of tissue were made available by the various Coroners in the UK and with the assent of the persons in a qualifying relationship.

    The cases were 1 male, and 3 female. Ages (years) M32, F32, F43 & F31.

    One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.

    One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.

    This raises the hypothesis that dysfunction of the sensory and probably also the autonomic nervous system may lead to abnormal neural activity eg hyperalgesia & allodynia rather than anaesthesia and may explain some of the symptoms of CFS / ME such as pain, hypotension, hyperacusis and photophobia. However, the syndrome may be heterogeneous.

    Nevertheless, the precise relationship of fatigue, which may be either peripheral or central, to abnormalities in the peripheral nervous system (PNS) needs to be studied.

    The differential diagnosis of ganglionitis should be investigated in CFS / ME patients hence Varicella Zoster, Lyme disease, HIV, Sjogren’s disease, paraneoplastic sensory ganglionopathy should be excluded by appropriate history and tests.

    Thorough histopathological study of cases coming to autopsy may help to confirm or refute the hypothesis, that CFS is a disease process, and whether the symptomatology may be explained by inflammation of the sensory and autonomic divisions of the PNS.

    A specific CFS / ME brain and tissue bank in the UK is proposed.
     
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  3. charles shepherd

    charles shepherd Senior Member

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  4. cfsStevew

    cfsStevew

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    thanks Dr Sheperd its great to have your assistance on here. I had not seen the full report although knew the autopsies had been done...

    It seems heterogenous but surely a broader neuro-inflammation...it seems obvious to try to learn from the most severe cases and absurd that the oxford criteria 'scientists' are still working...but of course I would not want anyone to suffer like these poor souls did. RIP.
     
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  5. charles shepherd

    charles shepherd Senior Member

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    I forgot to mention that a dorsal root ganglion block is sometimes used as a treatment for back pain:

    Dorsal root ganglion block

    What is a dorsal root ganglion block?

    This procedure called a dorsal root ganglion block is where a small amount of local

    anaesthetic with or without a steroid is injected on to a collection of nerve cells called

    the dorsal root ganglion which are located either side of the spine. This collection of

    nerves carry impulses from muscles and other parts of the body to the spinal cord and

    from there to the brain. When these nerves become inflammed (tissue response to

    irritation) they can give rise to pain.

    Benefits

    Performing a dorsal root ganglion block may help to alleviate the pain. If local

    anaesthesia with are without steroid provide temporary benefit, in selected patients, it is

    possible to do the procedure in a different way (pulsed radiofrequency lesioning) with an

    aim to provide longer-lasting pain relief. There is some evidence for this technique in the

    management of disc related back-pain problems.

    Risks

    Unfortunately no procedure is risk free. There may be some temporary discomfort at the

    site of injection, infection and bruising. There is a possibility that you may have an

    allergic reaction to the drugs used. Less common side-effects include leg weakness and

    numbness of legs. Very rare side-effects include nerve-damage, spinal cord damage

    and infection resulting in permanent neurological problems.
     
  6. lansbergen

    lansbergen Senior Member

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    Would not be a good treatment for me, I already had to much numbness and weakness. .
     
  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    One point I might add in relation to the original question. Dorsal root ganglion pathology would not be expected to be associated with weakness or paralysis. As Charles says, it is a way-sataion for sensory fibres.
     
  8. lansbergen

    lansbergen Senior Member

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    It was both overstimulating and understimulating at the same time. Do you think I was not puzzled?
     
  9. lansbergen

    lansbergen Senior Member

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    It still irritates me nobody came up with a good explanation such contradicting symptoms could occure at the same time
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    USA
    I continue to have active VZV IgM titers (besides EBV) even though I had chicken pox at age 11 and have never had shingles. Does this mean that I have dorsal root ganglionitis?

    Is this why I have all these autonomic problems? I want to try to understand this topic. Is it only something seen on autopsy or are there tests for it in a living person? Sorry if these are stupid questions! Is there a link to Sophia Mirza's story so I can learn more?
     
  11. cfsStevew

    cfsStevew

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    ah yes that is a good point. I had considered it might lead to the paralysis but I assume it is related to the need for darkened rooms, quiet which increases the pain felt...Im a moderate case and noise and light can feel quite noxious to me when I am having a bad period.

    Dr Shepherd thanks for the info on DRG block - I wonder if it might have alleviated the symptoms of some of these severe sufferers...I would assume the level of pain they would have been in with lesions in these areas must be considerable.

    One question I neglected to ask: what are the nodules of nagonette that also have been mentioned?
     
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  12. cfsStevew

    cfsStevew

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    Perhaps some of the more informed can comment...but I recommend watchign 'Voices From the Shadows' as a very informative documentary featuring Lynn Gilderdales story and Sophia Mirza. You can also find info about sophie on the website her Mum set up.

    http://voicesfromtheshadowsfilm.co.uk/

    http://www.sophiaandme.org.uk/
     
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  13. lansbergen

    lansbergen Senior Member

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    http://medicine.academic.ru/145122/Nageotte_nodule
    Nageotte nodule
    a cluster of satellite cells in a ganglion, resulting from satellite cell proliferation following the degeneration of a ganglion cell body in neuropathy.
     
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  14. lansbergen

    lansbergen Senior Member

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    http://jnnp.bmj.com/content/75/suppl_2/ii43/F2.expansion

    [​IMG]

    Figure 2
    Sensory neuronopathy caused by dorsal root ganglionitis showing a hypercellular cluster of lymphocytes (nodule of Nageotte) indicating active neuronophagia and ganglion cell degeneration (black arrow). White arrows indicate surviving ganglion cells.
     
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  15. cfsStevew

    cfsStevew

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    ok to get this straight. The nodules are a result from lymphocytes clustering around the dead ganglion cell body?

    I heard a description of these nodules as 'tombs of dead cells'...but the lymphocytes are not dead but recruited to deal with the ganglion cell neuropathy?

    I wasnt sure if part of that description was lymphocytes recruited as part of an inflammation response and attacking the ganglion cell...
     
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I doubt anybody really knows what is doing what. Pathologists tell stories based on pictures. Sometimes the stories vary - I think these in the picture are lymphocytes rather than satellite cells but who knows?
     
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  17. charles shepherd

    charles shepherd Senior Member

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    Just to clarify:

    1 This is an interesting observation in a small number of post-mortem cases - so we do not know at this point whether this is a more widespread finding in ME/CFS, or a recognised component, as it is in the case of Sjogren's syndrome.

    2 This is not a pathological finding that can simply confirmed in the consulting room.

    3 I'm not suggesting that a DRG block should form part of the management of ME/CFS. This was just an additional item of background information.
     
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  18. cfsStevew

    cfsStevew

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    yes I understand it is being investigated whether some sort of PET scan similar to the japanese trial can be carried out on or around the spine...

    Is there any figure on this finding vs not being present in post mortem?
     

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