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    #16
    My neck muscles are so weak that my head drops down and I can't look up. Navel gazers unite. πŸ‘†πŸ˜πŸ€—πŸ»xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #17
      LindaB Heather R, thanks, I will get back in touch with them x
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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        #18
        Originally posted by Rosemary6NT View Post
        I don’t have NIV yet as my CO2 was ok last time it was measured.
        Initiation of NIV is not/should not be solely based on CO2 retention level - there are a number of other indicators such as SNIP test, FVC figure, pulse oximetry results, not to mention your ability to sleep (or not sleep)

        The SNIP test is probably the best indicator of when NIV will be beneficial - Sniff Nasal Inspiration Pressure, aka a Sniff test. It's a simple, quick (cheap) test in which a clip is put on your nose and you sniff as hard as you can. Did you have this test lately and, if you did, any idea of your reading?

        I wasn't getting any CO2 headaches, even when scoring 19 on SNIP, when ≀ 40 is generally regarded as the cutoff point to start NIV.

        Clearly you're worried about your breathing and no way should you be left worrying for another 6 weeks, so I think you should at least have a video consultation with the respiratory lead or your Consultant as soon as possible. I am not saying you need NIV today or tomorrow but your breathing is impacting you, that's the reality. 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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          #19
          I gave up NIV and at night I have some issues with breathing out but annoyingly I make it till morning. I may have decent lungs but I smoked from 11 to 50 so why is a mystery. The thing about a terminal illness is that we get to make our own choices. Nes pa? πŸ₯πŸ₯–πŸ˜‰πŸ˜xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #20
            Rosemary6NT
            Take heathers advise and ring the respiratory team asap.

            Madge…..Can’t you seek advise too from OT and respiratory team.Must be awful being agitated sitting in one place all day.

            Best wishes
            Mary

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              #21
              Ellie matthew55 Mary C I’ve never had a SNIP test and my oximetry varies between 89 and 93. It’s interesting that you didn’t get headaches Ellie, I’m always asked about those, I very rarely get them. I will phone them tomorrow. Xx
              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                #22
                Originally posted by Rosemary6NT View Post
                my oximetry varies between 89 and 93.
                That's worse than mine Rosemary6NT Ring them, be assertive πŸ‘πŸ˜¬ πŸ€—πŸ€—πŸ˜˜
                ​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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                  #23
                  Originally posted by Ellie View Post

                  That's worse than mine Rosemary6NT Ring them, be assertive πŸ‘πŸ˜¬ πŸ€—πŸ€—πŸ˜˜
                  I did! I’ve got an appointment for Jan 5th but they have had to double book me so will have to hang around until I can be squeezed in. I was pathetic (she could hear how bad my breathing was) rather than assertive
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                    #24
                    Rosemary6NT I would describe you as resilient and determined....because you did it....don't be so hard on yourself πŸ’‹πŸ’‹
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                      #25
                      I totally agree with LindaB . Rosemary6NT your actions prove your far from pathetic. πŸ‘πŸ˜πŸ€—πŸ˜›xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                        #26
                        Rosemary6NT good luck with your respiratory apple on 5th.

                        It’s a bit late for me to comment on Ellie’s sniff test comment but when I’ve read it a few times it reminds me of my last clinic appointment. They didn’t do any sniff tests because of covid. They relied on the blood tests from our ear lobes xx
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

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                          #27
                          Originally posted by Rosemary6NT View Post
                          I did! I’ve got an appointment for Jan 5th but they have had to double book me so will have to hang around until I can be squeezed in. I was pathetic (she could hear how bad my breathing was) rather than assertive
                          Woohoo Rosemary πŸ‘πŸ‘ πŸ’ͺ πŸ‹οΈβ€β™€οΈ You were assertive, you rang them!

                          You might get lucky and not have a long wait - there may be no-shows with all this Covid around.

                          Write down what you want to say - questions, comments, any fears etc. 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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                            #28
                            Oh to be able to sniff again. πŸ˜πŸ˜…πŸ€—πŸ˜xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                            Comment


                              #29
                              Originally posted by matthew55 View Post
                              Oh to be able to sniff again.
                              You don't need to be able to sniff, per se, to do a SNIP/Sniff test - it measures your inspiratory effort and even a weak and paltry effort, such as mine, will register.

                              I know that wasn't why you wrote that and I'd like to be able to sniff too, rather than having nose dribbles flowing freely 😳 Oh well, c'est la vie 😘😘

                              ​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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                                #30
                                I can still just about force my right first finger into my right nostril, suitably dressed in tissue naturally. πŸ–•πŸ˜‚πŸ˜πŸ˜xx
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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