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Thread: Possible diagnosis

  1. #11
    Forum Member Ellie's Avatar
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    Hi Andy,

    Welcome to our motley crew.

    A few questions if I may...

    Was it the Neuro in King's who said you've "Possible ALS/MND"? I ask because there is a diagnosis of Possible ALS/MND, which is damage in one area - Probable ALS/MND is damage in two areas and Definite ALS/MND is damage in three areas.

    Did you have an EMG? I know you had NCS.

    Did you see a Neuropsychologist and do the assessment and, it was on that basis you were determined as having cognitive involvement? Or who, why and how? Cognitive involvement can be very subtle initially/always and not always obvious, hence the assessments.

    I've been on Riluzole for 10+ years and, thankfully, liver enzymes always ok.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  2. #12
    Forum Member nunhead_man's Avatar
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    Quote Originally Posted by philipb View Post
    Hi Andy. I started in a similar way to you. My "pinch grip" became weak and I visited the GP. ........................... I wish you all the best.
    Thank you for sharing - and best wishes to you

  3. #13
    Forum Member nunhead_man's Avatar
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    Quote Originally Posted by Ellie View Post
    Welcome to our motley crew..
    thank you

    Quote Originally Posted by Ellie View Post
    Was it the Neuro in King's who said you've "Possible ALS/MND"? I ask because there is a diagnosis of Possible ALS/MND, which is damage in one area - Probable ALS/MND is damage in two areas and Definite ALS/MND is damage in three areas.
    OIC - 'twas "possible" as it is damage in one area

    Quote Originally Posted by Ellie View Post
    Did you have an EMG? I know you had NCS.
    err - acronyms rule KO?

    Quote Originally Posted by Ellie View Post
    Did you see a Neuropsychologist and do the assessment and, it was on that basis you were determined as having cognitive involvement?
    Yes - it was at my consultant's suggestion in that a cerebral deficit helps the diagnosis and I've been trying every window for an understanding


    Quote Originally Posted by Ellie View Post
    I've been on Riluzole for 10+ years and, thankfully, liver enzymes always ok.
    Good news and hope mine is as good

    Best

    Andy

  4. #14
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    Hi,
    As well as climbing I was a kayaker, skier and cyclist. I still cycle as it helps my dominant leg which is now deteriorating (foot drop etc).

  5. #15
    Forum Member Ellie's Avatar
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    Hi Andy,

    An EMG is generally known as just that, an EMG (as are ECGs e.g.) It stands for Electromyography, but Neurologists call it an EMG. An EMG assesses muscle health and motor neurons. You'd know if you'd had an EMG as it involves sticking needles into your muscles!

    NCS stands for Nerve Conduction Studies, you said you had this test done. Quite often both tests are carried out in the same appointment.

    Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  6. #16
    Forum Member nunhead_man's Avatar
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    Thanks!

    Quote Originally Posted by Ellie View Post
    You'd know if you'd had an EMG as it involves sticking needles into your muscles!
    Yes I've had that

    Quote Originally Posted by Ellie View Post
    NCS stands for Nerve Conduction Studies
    Not sure how EMG and NCS differ?

    Best

    Andy

  7. #17
    Forum Member Ellie's Avatar
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    In simple terms: NCS is used alongside an EMG to differentiate a nerve disorder from a muscle disorder. NCS detects a problem with the nerve whereas an EMG detects whether the muscle is functioning properly in response to the nerve's stimulus.

    If you want a more scientific and technical explanation, I'm sure I've an article on it somewhere, let me know.

    Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  8. #18
    Forum Member nunhead_man's Avatar
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    Hi Ellie

    Quote Originally Posted by Ellie View Post
    INCS is used alongside an EMG to differentiate a nerve disorder from a muscle disorder. NCS detects a problem with the nerve whereas an EMG detects whether the muscle is functioning properly in response to the nerve's stimulus
    Ah! OK - I presume the bods I've been seeing can differentiate a nerve problem from a muscle one - otherwise the suggestion would be errr multiple sclerosis and not motor neurone disease?

  9. #19
    Forum Member nunhead_man's Avatar
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    To add I'm now on Riluzole - see other post

    Also interesting to see post on link with fitness - I used to be very fit - first category cycle racing licence and many miles a month - resting pulse rate 40 or less etc. etc. - lots of high mountain cycle touring - I still do 100miles per week doddling around work etc. given I can hold one type of handlebars but not others - have now amended my fast bike to suit my hand disability

    I think I need to keep going with my history – I’m not very good about controlling weight with diet.

    My doc at Kings was diffident about my question about carrying on with gym etc. - obviously muscles with no nerve feed do not work but the others still need working and he said carry on as normal - and my normal is a bit unusual for my age.

    Tying this in to a vague understanding that MDN damage is caused by some type of over excitation – so perhaps “over using” yourself physically has implications?

  10. #20
    Forum Member Terry's Avatar
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    It is quite common in people that do a lot of exercise.

    Terry
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