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Getting to the Root of the issue - Dorsal Root Ganglionitis

Discussion in 'General ME/CFS News' started by Firestormm, Nov 11, 2012.

  1. Firestormm

    Firestormm Guest

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    When I was embarking on this journey of mine, some 15 years or so ago, it seemed then that if only some proof was forthcoming, some unequivocal proof, some evidence, of a pathological nature, that could back-up the then prevalent name and associated definition attached to my diagnosis: myalgic encephalomyelitis.

    If only, right? Pretty sure it's what we and our doctors for that matter want. Because with a 'root' cause or evidence of something, anything, that might be involved in our debilitation, of a biological nature (obviously ;)) we might stand a far better chance of getting an effective treatment, and if not that, then maybe a least greater acceptance and understanding in the wider social world.

    Validity, right? Well, for some it looked like this might be the case with the handful (less than a handful) of autopsies that showed evidence of this basal root ganglionitis. I mean it's an 'itis', right? Encephalomyelitis, is one too? And the Basal Ganglia are kind of near the spine and associated with the nervous system, right?

    I've seen this association, this hope, variously stated across the internet. Unfortunately, most of the instances in which it has been used have tended to try and throw it at arguments pertaining to nomenclature: "What about dorsal root ganglionitis? THAT's proof of ME!"

    Most recently, the other day, I happened across this little 'gem' from ME Advocacy:

    I am no doctor or neurologist (obviously) and to be honest I didn't know or understand enough about the pathology to be able to comment for the most part, other than to say that until more autopsies were performed, a couple of instances will not sway any argument.

    The only chance of more autopsy tissue being made available for significant study are - in so far as I can see - that offered by the ME Association a project which is being held-up by cost burdens (there was an update to this effect in Essential's last week).

    The Biobank joint ventures won't cut the mustard - for evidence of dorsal root ganglionitis I understand you need tissue obtained from autopsy - though perhaps this 'inflammation' can be observed as is inferred above by use of some sort of scan - but I doubt it.

    Anyway, so I had little knowledge and therefore did not feel confident in commenting - though I did wonder as ever I do, why people who choose to make statements didn't themselves ask those who might know before broadcasting these assumptions - but there we go: c'est la vie.

    Then Dr Charles Shepherd in the latest issue of ME Essentials was asked the following question and responded (below). Don't get me wrong, it is a shame (in an obvious way) that dorsal root ganglionitis is not an example or proof of 'encephalomyelitis'. But we can't change pathology no matter how much easier we hope it might make things.

    Still, evidence is evidence and hopefully more autopsies will be volunteered, tissue collected, and studied with appropriate power.

    Of course dorsal root ganglionitis might be only part of the puzzle, and for some people, some of the time. But I'll take something over nothing any day of the week :)

    Any spelling mistakes are my own.
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    From what I recall, autopsies on couple of folk from the London hospital outbreak in the 1950s (who died a year or two afterwards) showed inflammation of that same area?
    and it's been ignored for 60 years...
    Sigh
  3. Firestormm

    Firestormm Guest

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    I don't know about that Silverblade. What I do know is that my own frustration has ever been that it's taken so bloody long to get folk to look where I would have surely ;) looked in the first place god-dammit!

    Let's dig up bodies! Seriously, I know autopsies are hard and expensive but let's get cracking now for heaven's sake. And what's up with not doing some studies employing whatever scans? Having said that I know we've had recent publications revealing issues with brain matter and the loike - but are these being followed-up? Or are they going to be left as 'interesting' and lead nowhere?

    All very frustrating. But as I said, evidence is evidence wherever and whatever it amounts to. We just gotta do it more often, bigger and better.

    DRG if found as a 'common factor' will need to be compared to 'controls' presumably and as Shepherd notes - the possibility of an external infection ruled out.

    The role and function of DRG in relation to reported ME symptoms will also need to be tied together and an aetiological hypothesis formulated.

    Once again, it is very early days and clearly even in the (Four?) cases studied not all those deceased patients had this inflammation. So.... But we can't really conclude much. And that's kind of the disappointing point really.
    leela, justy and Enid like this.
  4. Enid

    Enid Senior Member

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    Well to be humerous too Firestormm - 10 years ago with MRI brain scans revealing "intense high" areas (my Neurologist could not explain) very ill indeed, so did consider a donation to science. But the hunt for bio-markers is well on (various researchers) and dorsal root ganglia investgation was the subject of one of Cort's articles a little while ago. HERE.
    Firestormm likes this.
  5. Firestormm

    Firestormm Guest

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    Thank you Enid. What's become of Cort? Not seen him around for a while. Hope he's all right (relatively speaking). Yes. I'd forgotten the hypothesis from the Lights. Be good to hear more about this from them. Presumably, (I can't recall), they are not looking at autopsy tissue but exploring this my other means i.e. by way of genes?
    Enid likes this.
  6. alex3619

    alex3619 Senior Member

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    Similar spinal lesions were also found in animals injected with patient blood after the Adelaide atypical polio epidemic. Go figure. This was published in 1955. I think I recall the lesions were found in monkeys spines, but not in other animals.
  7. Firestormm

    Firestormm Guest

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    Errr.... are we talking about 'spinal lesions' here then Alex? I'm not sure we are. DRG isn't defined as a 'lesion' in anything that I have read, but if it is regarded as such then please let me know.
  8. Enid

    Enid Senior Member

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    Interesting alex - my Neurologist clearly considering polio too - "high intense" areas in the brain and "lots of anomolies" in your spine (not structural) whatever that meant.

    @ Firestormm - I see Cort pops in and out so hopefully resettled now.
    From memory all sorts of investgations going on - spinal fluids, abnormal protein identifications etc.
    certainly my Neurologist was prepared to release all his findings - MRIs, lumbar puncture fluid etc if I
    could find an ME specialist. I'm now a Mikovits et al fan - non-HIV Autoimmune Deficiency since at
    worst some latent viruses appeared, polio-like, chicken-pox like etc. But what sets off ?
  9. Enid

    Enid Senior Member

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    Also I've no doubt about some genetic component (or weakness) - my brother overseas developed a year later than I, and a cousin has recently developed FM. Somehow I see all on the same spectrum. But still left wondering quite what was the switch from good health all round, viral in one form or another my guess, and my Neurologist thought.
  10. Firestormm

    Firestormm Guest

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    Oh. That's right he was moving states wasn't he. Doh! Thanks.

    I am pleased to hear of any neurologist (or other specialist) engaging with patients like this and remaining open minded and willing to investigate.

    I think, Enid, my own feelings towards Mikovits are rather clear by now and they certainly haven't changed after that interview the other day. Still I wish you well and hope you aren't disappointed by following what could well turn out to be another wild goose chase. We naturally become a rather thick-skinned people I believe and not out of choice.

    Still. Faith, hope and money are not in endless supply, unlike opinions from 'experts' which are infinite. Bit of a minefield we have to negotiate isn't it? Anyway, all the best and I hope you get some answers.
    Enid likes this.
  11. alex3619

    alex3619 Senior Member

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    FURTHER INVESTIGATIONS ON A DISEASE
    RESEMBLING POLIOMYELITIS SEEN IN
    ADELAIDE.
    By R. A. A. PELLEw,
    Royal Adelaide Hospital,
    AND
    J. A. R. MILEs
    Institute of Medical and Veterinary Science,
    Adelaide.

    "However, there were lesions
    in the nerve roots and in the sciatic nerves. In the nerve
    roots close to their point of exit from the spinal canal there
    was pronounced infiltration with lymphocytes and mononuclear
    cells, and in a percentage of the nerve fibres were
    found vacuoles in the myelin sheaths and axon swellings.
    In the sciatic nerves there were small localized infiltrations
    with inflammatory cells associated with exudation of a few
    red blood corpuscles. The only abnormality in the skeletal
    muscle was the presence of sarcosporidiosis in all sections
    from one animal; but examination of the heart muscle of
    the monkey which had died showed severe myocarditis with
    widespread infiltration mainly with lymphocytes and mononuclear
    cells."

    I cannot give you a link to the paper, but I can send you a copy via PR conversation, along with the paper that described the Adelaide epidemic itself. When I referred to spine I was talking about the spinal nerves, and these pass from brain to body via root ganglia.

    "Definition:Lesion is a non-specific term used in medicine to refer to a pathology of tissue. It indicates an area of tissue that has been injured, destroyed, altered (for the worse) or has a problem."

    Lesion is a non-specific word meaning localized injury. I use it because we really don't know the nature of the damage, only that we can see damage.

    Bye, Alex
    Sidereal, leela, Persimmon and 3 others like this.
  12. Enid

    Enid Senior Member

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    This study has to be my best match alex - from my few test findings (well more than many) and recalling muscle function tests and excrutiating pain as the current passed up the spine and one Doc convinced of myelin sheath damage. Heart racing or slowing, lungs (as muscle) affected too. If only they could pursue.
  13. alex3619

    alex3619 Senior Member

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    That study was in 1955. Nothing has happened on this for 57 years! Thats before I was born. This should have been followed up with for the 1980s epidemics, but the CDC never bothered.
    L'engle, taniaaust1, justy and 2 others like this.
  14. Enid

    Enid Senior Member

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    I've just put in like - which is your response/input - the content pathetic really - how they might have solved things sooner instead of reinventing the wheel each time.
  15. Tammy

    Tammy Senior Member

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    Early in my CFS years my doctor did a test that showed positive antibodies to myelin sheath..............and there was definite myelin sheath damage..........as evident by the fact that I no longer can feel touch the way I used to. Hard to describe but when something touches my skin..........it doesn't feel normal....and this is uniform all over my body. It's as if I have a barrier or film on my skin. Thank god the damage did not get any more severe to where I couldn't feel anything............I can still feel hot and cold just normal skin sensation is not the same. I have only come across one other person that this happened to.
    Firestormm likes this.
  16. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    So whats the cause of the inflammation, the HIV virus?
  17. Firestormm

    Firestormm Guest

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    Potentially any viral trigger I suppose could be responsible but the point is that this DRG might not even be an issue for all or many of us. It could be something unconnected.

    Nobody has to my knowledge advanced a theory on 'ME' embracing DRG.l There simply is not enough evidence to make an association even if you relieve yourself of the burden of 'encephalomyelitis' which presumably you would need to do.

    We are talking about only 4 autopsies performed to date by the ME Association. I'll dig out the exact results (it was a Word document and I can't bloody find the thing this morning!) as I can't recall how many instances of DRG were determined from those 4.

    Here's the link to the Pilot Study for reference: http://www.meassociation.org.uk/?p=3765

    And an update on the MEA Tissue and Post-mortem Bank: 24 August 2012: http://www.meassociation.org.uk/?p=12558
  18. Firestormm

    Firestormm Guest

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    Ok. I am such a numpty sometimes (most of the time) :rofl:

    In the link above: is a word document that is brief and explains the autopsy results (including that of Sophia Mirza of course):

    Enid likes this.
  19. alex3619

    alex3619 Senior Member

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    One of the questions that always has to be asked about these things is whether ganglionitis is a cause of ME, a consequence of ME (complication) or associated with ME due to some underlying process that predisposes to both. The science still can't say. What cannot be disputed though is this is an important clue. An unusual result like this gives a clue to underlying pathology.
    L'engle likes this.
  20. SunnyInside

    SunnyInside

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    A while ago I learned about deep dorsal ganglionitis whilst watching the dvd Voices in the shadows. It got me thinking, as I had inflammation in certain areas of my skull and spine which seemed to feel lilke it spread from those areas, around my body.
    I booked myself in with a chiro/mctimony person, had three sessions over six weeks. The inflammation and pain went. It hasnt happened since.
    He realigned my spine, it wasnt out much, just slightly.

    This got me thinking was it my misalignment from the spine causing pressure on the nerves which caused the inflammation, or was it the inflammation of the nerves causing individual parts of my spine to be moved slightly.

    I had a head injury a few years ago, hit back of head on stone track from falling off pony. A lot of compression and problems undiagnosd for 18 months.
    I also had the polio drops and general vaccs.
    I'm 47.(originally put 57 :thumbdown:)

    I'm not writing this to ask for an answer, just thought it may be of interest and adding to the discussion with the ganglionitis connection.

    SunnyInside
    L'engle likes this.

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