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Thread: Diagnosis / Prognosois

  1. #11
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    That should read Your diagnosis................

  2. #12
    Forum Member Ellie's Avatar
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    Charles, there's an 'Edit Post' tab under your post if you want to correct your typo.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #13
    Forum Member Ellie's Avatar
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    Hi Carol,
    I posted this on another thread, which might be helpful for you…

    “The way to think of ALS is that of a spectrum involving motor neurons - Lower & Upper Motor Neuron (LMN & UMN) involvement/damage give rise to our symptoms and rate of progression.

    For example, one can have UMN Dominant ALS, i.e. not much LMN involvement or LMN Dominant ALS, i.e. not much UMN involvement.

    Those with pure UMN involvement are categorised as having PLS and those with LMN only have PMA.

    However, things sometimes change and motor neuron involvement can mean some people may converge towards 'typical' ALS, i.e. significant LMN & UMN involvement.”

    PSL has no time frame in which it could change to, eg, an UMN Dominant ALS, so I wonder if the Neuro will be just checking for changes in 3 months maybe? It’s not true that any change to a PLS diagnosis will happen in 3 months – or 3 years, for that matter!!

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

  4. #14
    Forum Member Terry's Avatar
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    Hi Carol;

    Ellie puts it quite well.

    Diagnosing any Mnd is quite hard, so to give you a type and to semi confirm it, they will probably keep monitoring you every 3 or 4 months for a while. Pure PLS is not common but if your progression is classed as slow then that's as good as it gets. Peoples progression normally seams to go in jumps but that that might not be the case it is more that you notice some things at the same time or that you are very tired.

    Love Terry

  5. #15
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    Thanks Prof. I am the last of the Luddites.

    Charles

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