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    #16
    From the MNDA Website, information for Professionals:

    Oxygen Use Warning

    Oxygen should be used with caution in the presence of respiratory muscle weakness, because this weakness can lead to the retention of carbon dioxide (hypercapnia) rather than hypoxia (inadequate levels of oxygen in the body).


    Patients with respiratory failure due to chronic neuromuscular weakness (seen in MND) will rapidly retain carbon dioxide. Supplementary oxygen therapy can have a serious detrimental effect in people with MND, reducing respiratory drive and worsening their condition.

    In this situation, non-invasive ventilation may be the most appropriate treatment, as oxygen therapy can lead to further respiratory depression.

    However, when oxygen levels are low, oxygen may sometimes be used with caution and appropriate monitoring โ€“ preferably under guidance of the personโ€™s specialist team with arterial blood gas monitoring.


    Matthew, if they want the link: https://www.mndassociation.org/profe...mptoms-in-mnd/
    Last edited by Ellie; 30 June 2021, 19:31.
    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    โ€‹

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      #17
      When I had my PEG op, I was told I was being given oxygen. I said I thought that was bad for people with mnd, but someone in the operating theatre reassured me by saying no, oxygen is good! I suppose I had it for quite a short time, and I live to tell the tale. But I realise now that I never asked about this after the op.
      Diagnosed July 2020, ALS bulbar onset.

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        #18
        In my MNDA info pack given at diagnosis is an alert card to carry...'caution I may be at risk with oxygen'
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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          #19
          Originally posted by LindaB View Post
          In my MNDA info pack given at diagnosis is an alert card to carry...'caution I may be at risk with oxygen'
          I'm beginning to think we need that warning tattooed on our foreheads... xx
          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          โ€‹

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            #20
            Originally posted by LindaB View Post
            In my MNDA info pack given at diagnosis is an alert card to carry...'caution I may be at risk with oxygen'
            I was given this card too and its on the MNDA wristband ... I still think some medics aren't aware... a tattoo's a good idea x

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              #21
              I was told if I needed to have oxygen it had to go through the Niv,they gave me a valve that goes into the back of the Nippy, not that Iโ€™ve ever had to have oxygen ๐Ÿ™๐Ÿป
              Janette x

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                #22
                Yes, NIV machines in general can be used with oxygen - they are used for lots of other conditions apart from MND - but, if on those rare occasions oxygen is used on a person with an MND, then CO2 levels must be regularly monitored, which is usually in a clinical setting, rather than at home. xx
                โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                โ€‹

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                  #23
                  matthew55 Hope you're doing OK mate, sending a special hug ๐Ÿค—๐Ÿค—๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜
                  โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  โ€‹

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