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    It keeps getting better

    Last night I was awoken by sharp pain in both of my big toes. I'm not moaning I just want to document my progression for whoever comes next. Like the cubs say init? 😁x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Probably squirrels looking for nuts. 🐿

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      #3
      I just had my third swab for the bigger C and got the happy news that I am probably going to be spending another couple of nights in a ward. I don't know if I'm happy or sad. πŸ€”πŸ˜x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        Where is this bigger c? When did you have swabs? What's been going on that you haven't shared? πŸ€”

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          #5
          Err Covoid test? πŸ€”x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #6
            Thought you meant cancer. Oh my goodness. Have you any symptoms?

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              #7
              No it was for my hospital visit
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #8
                I'm guessing you needed a clear covid test before your admission Matthew. I really hope you get answers from staying in for a couple of nights and you're well looked after.

                I get, what I imagine is nerve pain in my super, curly toes ( my toes are amazing !) It wakes me in the night and I can't bear anything on them. My OT has got me a frame to keep the covers off.I'm waiting for botox but I'm not sure if it's suitable if you're still mobile.

                Love Debbie x

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                  #9
                  FGS Matthew, just spit it out 😲 It's like pulling 🦷🦷 (special analogy for you πŸ˜‰)

                  What's the hospital stay for - teeth, NIV, xyz?? You wouldn't have started this thread if you weren't going to eventually divulge all.
                  ​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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                    #10
                    It's for NIV and cough assist at the Whythenshaw 😁x
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #11
                      What a shame you've to go in as an inpatient πŸ˜ͺ
                      ​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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                        #12
                        Well that's what the nurse told me today. I have an overnight test tonight and tomorrow to do and it will be up to the consultant but Joshua seemed certain. 😁x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #13
                          matthew55 how long did you wait for the appointment? The consultant has referred me to Wythenshawe for a breathing assessment two weeks ago, but I've not heard anything yet.
                          Each day is made easier with a bit of humour.

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                            #14
                            matthew55 Keep us updated x
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            ​

                            Comment


                              #15
                              Mine came out of the blue and that was a week ago but I gather a report was made of me and it sounded like I'm close to dying aparantly 😁x
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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