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    Testing

    Hi everyone, I had a cancellation at my local hospital yesterday for some electricity and fine needle work😳 i had a test in June which started the alarm bells ringing, well after a lot of electricity and prodding the doctor said there wasn't a lot of deterioration from June only a slight fall in my right hand muscle wastage, and she was very optimistic that it may be pls if my condition doesn't speed up, I'm over the moon at the moment that it hasn't got to aggressive YET but still a nice thing to be told, I have an appointment on January 19th with a neurologist then a brain scan and spine scan cheers everyone x

    #2

    May I ask why are you having the scans in January - I ask because it's unusual to have ongoing brain and spinal scans after an MND diagnosis.

    Also, are you attending a specialist MND Clinic? Hopefully you are.

    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Hi Ellie, I had a electronic test and needles in June, not sure of the name of it sorry, which started the alarm bells then I was referred to a mri scan end of October in which 4 weeks time after the mri scan I was told I had als, yesterday I was asked to attend another electronic test too which the doctor said I'd not got any worse and her thoughts could be I have pls but there giving me another mri scan on my brain and spine just to rule everything out.

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        #4
        The needle test is called an EMG.

        As there is no diagnostic test to confirm ALS, all other mimics should first be ruled out before the diagnosis is given, that's why I said scans etc. are done before the, let's face it, horrible diagnosis of ALS is given.

        Atrophy is a sign of lower motor neuron damage - PLS only involves upper motor neurons - which is another reason why I said I hope you're being seen by an MND Specialist Neurologist.

        Hope your progression continues slowly.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Thanks Ellie
          I get a bit mixed up with it all to be honest. Typical man. I had a MRI scan on the spine and the EMG test. When I seen a neurologist on 6th she completed lots of other tests ie reflexes, sense tests etc. She confirmed it as ALS but then said she was referring me to a MND specialist which is my Jan appointment. She also wanted me to have the EMG test done again to see if there were any radical changes in 6 months and she was a little unsure of the results on the MRI on the spine as there was a white line showing which she said could be a bit of shadowing as it was not clear enough. As they have not done a brain scan she also requested this just to rule out anything else. It will be a MND specialist I see in January though. I hope that makes a bit more sense as very difficult to understand everything and the lady who completed the EMG said from her experience she would say its PLS but cannot confirm and only the specialist would be able to give me a clearer diagnosis of the form I have but she sounded very positive that it was very slow progressing which although is still early days as to how things will be moving forward.
          love Simon

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            #6
            Thanks for that explanation, Simon, it makes more sense now.

            Good that you'll see the MND Specialist next month - well not good that you need to go to an MND Specialist, but rather it's right way to go, if you know what I mean 😏
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #7
              Hi Ellie, I have the early signs but at this moment its not that aggressive but as we know this dreaded disease can change very quickly, all I can do is try and keep upbeat and soaking up all the love from my friends and family 🙏❤

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                #8
                I had that test done it was inconclusive for mnd. Which was diagnosed 4 months later by the ventilation team

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