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    Gene testing

    Hi Graham

    Were you happy with the lengthy answer to your question about gene testing at the AGM this afternoon?

    Doug
    Diagnosed April 2017

    #2
    Hi Doug,

    I tuned in at 4.30pm TODAY and was gutted that I messed up the days.

    It has been a difficult few weeks here, sick staff on top of being ill myself with stomach bug. I have gall bladder stones too, so I need an op.

    What was said? I suspect that gene therapy is the only real option to tackle MND.
    Copyright Graham

    Comment


      #3
      Oh graham sorry to hear you are poorly. That sounds painful. I hope things improve for you soon.
      thinking of you
      Denise xxx
      when i can think of something profound i will update this.

      Comment


        #4
        Oh dear!

        So sorry about all your ailments Graham.

        I'm ill myself at the moment, including BPPV, and can't type a long reply.

        It may be on the website later.

        Briefly, Brian Dickie broadened the question and gave a good overview of the complexity of genetics and MND - familial v. sporadic, SOD1, C9ORF72, counceling, etc. He warned about the danger of commercial genome companies giving too simplistic interpretations of tests.

        Hope you feel better soon.

        Doug
        Diagnosed April 2017

        Comment


          #5
          Oh Doug, how awful for you

          Is that why you fell or maybe as a result of the fall?

          Wishing you a speedy recovery.

          big hug.jpg

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

          Comment


            #6
            Thanks Ellie for the big gorgeous hug!

            No, it's not fall related. A few days afterwards I was getting a bit better and transferring from the shower chair to my bed. I toppled sideways on to the bed as usual but a bit too fast and jolted my head when I stopped quickly. That was enough to stir up the granules into the fluid in the canals.

            The whole room swam - it was awful! Such nausea!

            It may be easing slightly now. But returns if I turn my head in certain ways. The net result is I've had to remain in bed for eight days. Not good.

            Hugs

            Doug x
            Diagnosed April 2017

            Comment


              #7
              Oh Doug I'm so sorry. I know that feeling well. I've had that problem and it's dreadful. I was going to send a get better message earlier but had no idea what you meant by bppv. I was going to look it up and forgot.
              I hope it doesn't take that long to correct itself.
              big hugs from me too and a few kisses
              Denise xxx
              when i can think of something profound i will update this.

              Comment


                #8
                Oh for goodness sake my message is unapproved again.
                Doug get better soon. I won't do it all again but this is sent with love and hugs
                Denise xxx
                perhaps we should be given a list of things we aren't supposed to say. This is stupid.
                😚😲
                when i can think of something profound i will update this.

                Comment


                  #9
                  It must be those risqué photos you keep trying to post, Denise - they’re onto you 😉😂


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

                  Comment


                    #10
                    Thanks Denise!

                    Don't worry. I approve your message!!

                    Doug x
                    Diagnosed April 2017

                    Comment


                      #11
                      Ellie we are going to hold you to sunbathing with your boots off! 🤤
                      when i can think of something profound i will update this.

                      Comment


                        #12
                        I wish you a speedy recovery Doug from your current problem but I am afraid I can’t magic away MND.

                        Barry
                        I’m going to do this even if it kills me!

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                          #13
                          Hi guys, thanks for the get well messages.

                          Doug, there is a manoeuvre which effectively puts the crystals back where they belong but it means venturing out into the covid world.

                          I asked for the NHS to routinely whole genome test, for those interested. MND diagnosis hasn't progressed anything like cancer.

                          Hmmm Denise, hmmm. We have our on you.
                          Copyright Graham

                          Comment


                            #14
                            Hello Doug,

                            So sorry you're feeling so rubbish ! Hope you're feeling better soon. Feeling dizzy and sick in addition to MND is adding insult to very serious injury!

                            Big hugs from me too,
                            Love Debbie x

                            Comment


                              #15
                              Hope you're feeling better soon Graham and you're in less pain !

                              Hugs and a firm handshake to you.
                              Love Debbie x

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