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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. user9876

    user9876 Senior Member

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    NK17 and Enid like this.
  2. Firestormm

    Firestormm

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    Yeah I read that one too User. Was hoping for some more information. I suppose they will be asking for 'donations' and will need these before they can publish anything. Not like one has a freezer-full of dead ME patients is it?! :)
     
  3. user9876

    user9876 Senior Member

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    What they say about the trial suggests that they have funding.

    I think it is hopeful that they are not satisfied with just doing a rituximab trial but are trying to understand ME as a disease hence looking into a possible site of imflamation. Its good to see people trying to fit the pieces together.
     
    rosie26, alex3619, NK17 and 3 others like this.
  4. alex3619

    alex3619 Senior Member

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    The Norwegian researchers are out of the box thinkers, I think. We need that. At least some doctors were using CPET, for example, decades ago to test ME and CFS patients. Yet nothing happened with it. Similarly we have known that blood from newly infected ME patients might have a transmissible pathogen since 1955. Yet how much research is going into this? Too much gets overlooked, its nice when someone opens up their toolbox and tries a screwdriver instead of a hammer.
     
  5. scisolver

    scisolver

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    Very interesting. I just heard today on an ME podcast that autopsies showed Dorsal Root ganglion damage in ME.

    This makes a lot of sense because years ago I decided to try treatment for lyme disease in case that is what I had before i knew about ME. I scammed into a fame test from Igenx as the familiar story goes. I was skeptical, but thought why not try the antibiotics as the test.

    Well,, after taking several antibiotics including minocycline, azithromycin, bactrim and refampin I started to get unusual rain drop sensations all over my body. These eventually turned into stinging and burning sensations.

    I had felt the cold water sensation before because during the onset of the fatigue years before it started with running water sensation in the legs.

    Anyway, it got very bad and I started to get numb burning feet which thankfully only lasted a month and I stopped the antibiotics. However, I had episodes of the burning return and last for over a year many times over 5 years.

    I did a ton of research on neurology and determined that the only way this could be explained was either in the small fibers (A and C-delta) which sense pain/temperature or from the dorsal root ganglion, which I suspected more. I also suspected it more because I know that in forms of neurological celiac this is sometimes the organ effected. I even talked to the world expert on celiac dorsal root ganglions in the UK by email.

    I told my neurologists that I thought my symptoms were probably caused by damage at the dorsal root ganglion because there was no other place that could cause systemic sensations like this. He said that was not possible because if there was damage to that I wouldn't be able to even talk to him or speak to him. I find that physicians are incredibly inept.
     
    Lisa108 and Sidny like this.

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