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  • nunhead_man
    replied
    Thanks!

    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

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

    Best

    Andy

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  • Ellie
    replied
    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.

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  • Guest's Avatar
    Guest replied
    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).

    Leave a comment:


  • nunhead_man
    replied
    Originally posted by Ellie View Post
    Welcome to our motley crew..
    thank you

    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

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

    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


    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

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  • nunhead_man
    replied
    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

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  • Ellie
    replied
    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.

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  • philipb
    replied
    Hi Andy. I started in a similar way to you. My "pinch grip" became weak and I visited the GP. She was unable to identify the cause. After some time my arms started to become weak and I lost body mass around my shoulders. Revisited the GP, a different one this time, and he looked at the webbing that connects the area between the thumb and index finger which had atrophied. Combined with the arm weakness he refered me to a neurologist. Tests confirmed ALS. By this time the muscles in my neck had pretty much packed up. That was a little over two years ago. I have been on Riluzole since then with no adverse effects. I wear a neck support collar, the Sheffield Support Collar often refered to as the Sheffield Snood and would struggle without it. My walking is becoming more awkward, with frequent stops required to take a rest.
    As others have said, there are many different ways we start the journey with the disease. I wish you all the best.

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  • nunhead_man
    replied
    Originally posted by Terry View Post
    It sound like you might have had some or most of the tests
    Thanks again - forgot to say I've had a bod doing reflexes with the traditonal rubber hammer - seems to show the damage to the relevant motor nerves go all the way to motor region of the cerebral cortex - apparently this is an MDN indicator and nerves are not trapped somewhere e.g. in my wrist or neck,

    Hence the original comments about loosing marbles - apparently cerebral cortex damage to motor neurons sometimes associated with other damage there

    Best

    Andy
    Last edited by nunhead_man; 1 August 2017, 10:53. Reason: spelling!

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  • Terry
    replied
    Hi Andy;

    * muscles that control all fingers to extend not working
    * muscles that pull in finger grip as strong as ever
    * some muscles in forearm and upper arm wasted

    Those symptoms are not so good as I have them.

    It sound like you might have had some or most of the tests, it depends on what they where looking for in them but they might be able to look back at them. I just hope it's something else and you get an quick answer.

    Love Terry

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  • nunhead_man
    replied
    Originally posted by Chrisp View Post
    I had a similar start to MND, the doctor first diagnosed tendonitus in my dominant hand, then carpel tunnel syndrome. The hospital operated on my thumb, thinking it was a pulley problem (I climbed at the time and had several hand injuries). Fortunately the orthopedic consultant was not convinced and sent me for nerve conduction tests.Chris
    Ah - thanks - similar path to me except I'm a cyclist and major computer user

    Best

    Andy

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  • nunhead_man
    replied
    Originally posted by Terry View Post
    welcome to the forum
    Thanks

    Originally posted by Terry View Post
    How have things progressed and what other symptoms do you have?
    * thumb and forefinger pinch does not work properly
    * muscles that control all fingers to extend not working
    * muscles that pull in finger grip as strong as ever
    * some muscles in forearm and upper arm wasted

    So I cannot e.g. do up shirt buttons with my affected hand and I drop things - but I can grip my bicycle handlebars - the one with flat bars - and ride perhaps 100 miles per week - and use the brakes having adjusted the brake lever position

    Originally posted by Terry View Post
    What tests have you had?
    * head and neck MRI
    * scan for carpel tunnel
    * spinal tap to check infection / inflamation with blood tests
    * electrical nerve conduction tests

    Originally posted by Terry View Post
    I don't think that by what you wrote that it's time to start taking Riluzole!
    Perhaps I was understating what is going on?

    Best

    Andy

    Leave a comment:


  • nunhead_man
    replied
    Originally posted by Bern View Post
    My weakness started very similarly to yours but it wasn't my dominant side which was lucky for me. My left leg is weak now and I can't walk far. Hopefully you will have lots of support put quickly into place.
    Thanks - sorry to hear about leg weaknesses - not gotten that far yet

    Originally posted by Bern View Post
    Like lots of people I'm on Riluzole. I'm just starting my 3rd month of it and I've had blood tests every month because it can cause liver damage. To date, everything seems to be fine with it and it hasn't given me any side effects.
    Again thanks - seeing my GP next week to get started, blood test and all

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  • Guest's Avatar
    Guest replied
    Hi,
    I had a similar start to MND, the doctor first diagnosed tendonitus in my dominant hand, then carpel tunnel syndrome. The hospital operated on my thumb, thinking it was a pulley problem (I climbed at the time and had several hand injuries). Fortunately the orthopedic consultant was not convinced and sent me for nerve conduction tests.
    Chris

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  • Terry
    replied
    Hi Andy and welcome to the forum;

    How have things progressed and what other symptoms do you have?

    I don't think that the pinch action is the first to go with most people with Mnd, generally it's failing to be open fingers and movement restrictions in fingers and hands.

    What tests have you had?

    I don't think that by what you wrote that it's time to start taking Riluzole!

    Best wishes, Terry

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  • Bern
    replied
    Hi Andy,
    Welcome to the Forum where you will get lots of good advice. My weakness started very similarly to yours but it wasn't my dominant side which was lucky for me. My left leg is weak now and I can't walk far. Hopefully you will have lots of support put quickly into place.

    Like lots of people I'm on Riluzole. I'm just starting my 3rd month of it and I've had blood tests every month because it can cause liver damage. To date, everything seems to be fine with it and it hasn't given me any side effects.

    Mine is sporadic MND/ALS.

    Not sure this is any help because as you've realised, everyone seems to follow a different path!

    Take care,
    Bern

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