Update

[Ellie]

matthew55 Hope you're doing OK mate, sending a special hug 🤗🤗😘😘😘😘

[Ellie]

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

[Nettie]

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 I’ve ever had to have oxygen 🙏🏻

[Deb]

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

[Ellie]

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

[LindaB]

In my MNDA info pack given at diagnosis is an alert card to carry...'caution I may be at risk with oxygen'

[Heather R]

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.

[Ellie]

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 – preferably under guidance of the person’s specialist team with arterial blood gas monitoring.

Matthew, if they want the link: https://www.mndassociation.org/profe...mptoms-in-mnd/

[Ellie]

NO!! DO NOT LET THEM.

because your respiratory muscles are weak, how you process oxygen is inefficient and you will retain too much carbon dioxide., that is dangerous.

Sometimes, using a very low volume of O2 is just about OK provided it is used in conjunction with NIV, and your CO2 levels are constantly monitored.

If they saw your Sats were a bit low, maybe 93-94%, and suggest using oxygen to get you up to 99%, that is not how ALS respiratory failure is treated. NIV is the only 'treatment'. xx

[matthew55]

They want to give me oxygen

[Ellie]

If you mean what to we breathe in if using NIV, that is just room air - is that the context of your question, or do they want to give you oxygen? xx

[matthew55]

I always forget but what's that stuff we have to use instead of oxygen?

[denise]

With your pee problem you could have asked for a water bed

😂

[matthew55]

Yes and very quickly 🤗😘😍😁 xx

[Ellie]

Day three and I finally ask for an air mattress 😘😁😍😁 xx

Not like you to be shy and retiring 😉 did you get one? xx