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What is “last stages”

Don’t wish to upset anybody, or step on toes, mibbe I’m a wee bit thick, but could anybody enlighten me as to what is the final or last stage/s of MS is/are, I know for a fact MS is NOT a killer but may bring on symptoms that are, or could be, the cause of death, as I believe, there is, Relapsing/Remitting, Secondarily Progressive, and, Primary Progressive, from the first two you may go onto the third, or you can be lucky, like me, and go straight to PP, but to talk about, last stage and death bed, is a bit OTT, to me, Brian

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Hi Brian

I know we are always told that MS is not a killer, that people die with MS, not of it. But the fact is that some people do in fact have MS as at least a contributory factor in their death.

If this wasn’t the case, the EDSS stage 10 wouldn’t be ‘death as a result of MS’.

Peoples bodies and minds can be so weakened by MS that they are open to all kinds of opportunistic infections.

Personally, I can’t bear the thought of being bed bound, PEG fed, unable to see, hear and / or speak. To have my cognitive abilities reduced so greatly that I can’t communicate or recognise my loved ones.

This to me is ‘final’ or ‘end’ stage MS. And I want to do all I can to avoid it for myself.

Sue

Before I was diagnosed with ms, a former work colleague’s husband in my former work place had final stages. He was in a hospital bed in the house. I know that quite frequently she had to call ambulances because of infections and respiratory problems etc. I heard through another ex colleague that he has since sadly passed away. I think he was younger than me so I guess late thirties, early forties, it may be he had a very severe form. In fact before I was diagnosed all the people I knew (albeit not really closely) that suffered with ms were severely effected, this coupled with the fact my mum is a nurse and her recounting the people she had nursed with ms really added to my fears of what could happen, in fact it was my mum who was fighting the tears at the appointment, maybe it hadn’t sunk in for me. Since my diagnosis I’ve gone to the local groups and seen how varied a condition it is. I also remind myself that when my mum was nursing there were no treatments whatsoever available. I also think that, as we all know, you can have ms and appear perfectly healthy as it were, so maybe the worst cast are more visible. I hope I haven’t offended anyone in my post.

Brian, I am/was a palliative care nurse, then Dietician. I worked in a hospice & various care settings throughout my career. I have lost a very dear friend to complications, who had PPMS. Truth is, whatever the illness, ie, Cancer, MND or MS, unfortunately even simple things like a common cold will cause problems. No, MS in itself will not cause a death, being immune compromised will make living with such an illness a whole lot more difficult. Personally, I am not PPMS, I have SPMS (or advancing, which ever is more descriptive) but in all honesty, I have only looked after 3 people in 30 years, with PPMS, in a care setting, that have died with complications that have MS. I am not going to say the others I looked after didn’t have serious health problems, they did. I am not going to say they were not vulnerable, they were. I know you are probably thinking I am sugar coating things, I won’t do that, but I am only passing on my experience of MS & how it may/does impact on eventual death. I have RA as well as MS & Scleroderma, RA has passed on to me an enlarged heart, Scleroderma is attacking my soft tissue around my organs, do you see where I am coming from? There will be other factors at play & it seems to be a lottery of what will cause anyone’s eventual demise. As we all know, many forms of Cancer will result in inevitable death, MS is not given ‘responsibility’ of that, hence our confusion. I hope I haven’t come over as dismissive, believe me the whole subject has taken up a lot of my time, the stages Sue has described is my worst nightmare, hence my living will, no intervention, at all. Unfortunately, none of us know how things will end, whichever way they will, but try not to ponder, easy said than done, but it’s all we’ve got take care xxxxx

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Brian, you are dead wrong about MS not being a direct cause of death.
A lesion in the brain stem that affects the ability to breathe or the heart to function (for example) is a very direct cause of death.

You have got the MS types the wrong way round as well - RRMS and SPMS do not lead to PPMS.
PPMS is a standalone condition. RRMS can (usually does) turn into SPMS (which is another standalone condition.
The big variable is how fast RRMS changes to SPMS - it could be 30-40 years, it could be less than 10.

Geoff

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I have an ‘Advance Directive’ aka Living Will too. The thought of a living death brought on from whatever cause makes me shudder. I have absolutely no desire to find out whether ‘death from MS’ is possible by experiencing it. Sue

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Hi Geoff, you’re right about ppms being a stand-alone disability but no one has ever died from ms, it may contribute but alone, it never has, or will be a killer, Brian

Perhaps you should read the second sentence of my post #6 again Brian.
I will agree that you will not find MS listed as a cause of death, but if your lungs stop working because MS has screwed with your brainstem on account of MS, then it is MS that has killed you.

Your death certificate will probably say pneumonia, and will be correct in that the failure of your lungs to function will mean that surplus fluid is not exhaled, and a stethoscope will detect the faint bubbling sounds of pneumonia.
Dead is still dead, and MS will be the actual cause, if not the official one.

But don’t take my word for it, read:

and you will find the following statement:

"Slightly more than two of every five people with multiple sclerosis died from the disease
or from complications common to MS patients, such as infected pressure sores, pneumonia
or bladder infection, Marrie said."

Geoff

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i think some people are very naive with regards to how severe MS can be,i have seen it first hand of how bad it just can be.

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Marburg’s MS is usually fatal, but fortunately pretty rare.

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mrs j

aye, me too…

ellie

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Death. I wouldn’t worry about it we all die.

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