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Which variety do I have?

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    #1

    Which variety do I have?

    Today i have decided to ask my support persons which type of MND i have! Just out of interest.....
    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.
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    #2
    surprised they didnt tell you when diagnosed. why did i have a tin of heinz baked beans in my head. honestly evelyn i need to get out more. xxx
    when i can think of something profound i will update this.

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      #3
      EvelynMW Gene type, MND type or both? xx
      ​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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        #4
        Ah, Ellie, is 'gene type' a type? found out i need to know in order to get travel inurance to cover it!
        Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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          #5
          Your signature says you have a "wonky gene" - I was asking if you were being told which gene had caused you to develop your motor neuron disorder.

          As for the form of MND you have (limb onset or bulbar onset ALS, PMA, PBP, PLS), I hope you were able to get an answer to your question. If it is familial, that narrows it down. xx
          ​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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            #6
            Ellie It is familial but i wasn't given a choice about genes, just the list as you say, maybe 1 or 2 others. My gene is the common one, CF4....
            Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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              #7
              Originally posted by EvelynMW View Post
              My gene is the common one, CF4....
              ?? C9orf72 maybe. It's important to know for potential inclusion in clinical trials. xx

              ​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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                #8
                It is so important to know Evelyn. It informs what care you need primarily but in recent times it may be that a treatment is available.

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