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Truncal ataxia or disequilibrium is an unrecognised cause of orthostatic intolerance in patients with myalgic encephalomyelitis (Miwa, 2017)

Discussion in 'BioMedical ME/CFS Research' started by Tom Kindlon, Aug 17, 2018.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  3. Wonko

    Wonko Senior Member (Voting Rights)

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    Hmmmm........I only "pass" the Romberg test sometimes, it used to be every time but, probably oddly, as I've got weaker my ability to deal with short periods of loss of vision has improved.

    Not sure if that's relevant to this thread now I've written it :(
     
  4. duncan

    duncan Senior Member (Voting Rights)

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    Disequilibrium and/or ataxia a cause of OI...? Wouldn't "component" be more apt?
     
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  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Another person whose result varied:


    It is interesting if a test is not reliable, i.e. results vary with retesting.
     
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  7. Denise

    Denise Senior Member (Voting Rights)

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    Tandem Romberg is one of the neurological tests in the NIH Common Data Elements.
    Another neurological test that patients sometimes pass and sometimes fail(same patient)is the Hoffman.
     
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  8. Seven

    Seven Senior Member (Voting Rights)

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    I do not pass the Romsberg test, what do you do if that is the case???
     
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    In one of the CDC papers by Bill Reeves and team, they said they excluded people from the diagnosis of CFS if they had a positive Romberg test. I haven't heard any one else doing it. It doesn't seem like a good idea.
     
  10. Inara

    Inara Senior Member (Voting Rights)

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    Huh, the Romberg tests I had were always with opened eyes. I could have problems with closed eyes. How's it done correctly? How long is it done?
     
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  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://en.wikipedia.org/wiki/Romberg's_test
     
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  12. Inara

    Inara Senior Member (Voting Rights)

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  13. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I often stumble when I blink but, like others it varies in intensity. It does not happen when I hold onto something and I realised that I press my feet down hard when it is dark or I have to stand without touching anything, and that pressure prevents the stumble as it helps my body decide where it is.

    I'm sure it is a problem with proprioception which makes sense with all the other nerve damage I have.

    If doctors would ask us how we cope with things they would learn more about the illness. We are so damaged that we have had to find ways round things in a way that someone recently ill has not and we also put up with things that others would complain about because it is normal for us.

    Some of the variation could be because PEM leaves us too ill to do the things that usually STOP the problem, rather than the problem just happening during PEM.
     
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  14. Wonko

    Wonko Senior Member (Voting Rights)

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    It's little simple everyday things that allow me to monitor such things, such as; it used to be mostly impossible for me to wash my face unless I was sat down in the bath, or I'd fall over when my eyes were shut, or be unable to correctly find the sink and smash a hand into a tap etc. coz my body wasn't positioned as I thought it was (my bathroom isn't big enough to fall over in but I'd fall/topple into the door, or the wall above the sink etc.)
     
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