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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

    #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

      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

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          #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

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              #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

              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.
                😚😲

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                  #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

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                      #11
                      Ellie we are going to hold you to sunbathing with your boots off! 🤤

                      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

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                            #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

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

                              Hugs and a firm handshake to you.
                              Love Debbie x

                              Comment

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