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Thread: Advice / reassurance about symptoms

  1. #11
    Forum Member
    Join Date
    Feb 2020
    Dear Ellie,
    Thank you for your further reassurances. I'm in awe of you all offering support . Thank you.
    Love Carrie xx

  2. #12
    Forum Member
    Join Date
    Feb 2020
    Having seen a neurologist today regarding my symptoms I feel a little calmer although still obviously donít have a diagnosis.
    I do have to have nerve conduction tests and although I am not thinking I have MND I do still have all over fasciculations. Can I ask if anyone knows how these tests know which fasciculations are due to MND or due to other causes. Is there a way that you could be diagnosed wrongly with MND because of fasciculations?
    I appreciate this may sound like a naive question and I in no way intend to offend anyone. Thank you

  3. #13
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Hi Carrie,

    Fasiculations in muscles are created by all sorts of reasons, not the least in my experience when I am fatigued from exercise and muscles then shake and throb like nobody's business!

    There are other causes including having too much caffeine (I know that one) and the effects of other drugs.

    And as Ellie has said above, MND never shows fasiculation without muscle weakness


    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  4. #14
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Carrie,

    Iím glad youíre somewhat calmer following your appointment - what did the Neurologist say?

    I presume youíre having an EMG test as well as an NCS? (An NCS detects a problem with the nerve, whereas an EMG detects whether the muscle is working properly in response to the nerve's stimulus)

    To answer your questions and assuming youíll have an EMG:

    The test picks up any abnormalities and yes, the Neurophysiologist can determine if the results are suggestive of a motor neuron disease.

    A diagnosis of ALS/MND is not given lightly - there are criteria to be met before itís given. So, whilst nobody is infallible, itís highly unlikely for someone to be incorrectly diagnosed with an MND and much more likely that someone is left without a diagnosis while further investigations are carried out to determine what is actually going on.

    When is the appointment?

    All the best.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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