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Advanced ms ?

Hi all,

Reading the carers section of the forum is quite scary , not to mention heart breaking . I looked after my mum for 10 years ( not ms )and I know how hard it can be on both the person needing care and the carer.

It got we wondering if we all end up with 'advanced ’ or ‘end stage’ ms eventually ? Assuming that we otherwise have good health and something else doesn’t get us first.

June

Ps, I hope my question isn’t too gloomy or upsetting for anyone.

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Hello June

Nowadays the term ‘Advanced’ MS is generally used for people who’ve had MS for a number of years (or occasionally not long at all), and are either progressive and quite disabled, or relapsing remitting and quite disabled. It doesn’t mean the same as ‘end stage’ MS.

Advanced seems more appropriate for many people than the more usual labels for MS, me for example. I’ve had MS for 22 years, and was RR for most of that time. While the first 10 or so years were fairly uneventful, and over the next five I was probably just getting gradually a bit more disabled, soon enough, the fact that I’ve been unable to take most disease modifying drugs (not available at first and side effects took care of most of the rest) took its toll. Since a huge relapse in 2012, I’ve been more or less unable to walk. I can manage a couple of metres with FES or an orthotic and a walker, but most of my waking life is spent sat down, either in a wheelchair or otherwise. I was redesignated secondary progressive about 3 years ago and thought that was that, until 2 relapses last year means I am now relapsing progressive. The term Advanced seems very appropriate for someone like me, I’m fed up with all the label changing. I may be able to take a DMD now, but strictly speaking I don’t qualify for them. I’m still waiting for the final decision.

Your question about ‘end stage’ on the other hand is different. For years we were always told ‘MS will not kill you, you won’t die of MS, but with MS’, ie, something else will get you first. And I believe this is still true for most of us. But some people do in fact die of MS. If they didn’t there wouldn’t be a level 10 on the Expanded Disability Status Scale (EDSS), which states ‘Death due to MS’, see https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss

It’s a bloody sad fact that some people do die horrible, sad, personally degrading deaths because of MS. As for how many, I don’t know if that figure is known. I personally do not intend to be among their number. I have an Advanced Statement (aka Living Will), so hope that I won’t accidentally end up on any kind of life support. I also plan on some form of assisted death when I get to the point that it seems a better option than living through the ‘end stage’. Hopefully by the time I get there, it will be legal in this country, otherwise it means travelling abroad. This may sound a bit negative, or even depressing. I don’t, I am glad I’ve already got a plan, and have shared that with my family and friends.

Sue

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hiya

that makes sense to me. i have been diagnosed 13 years, no treatment offered/discussed for 8 years (not my choice-long story!) started tysabri in 2013 (but it was too late as it followed one relapse that completely turned my life upside down) so after 5 years of taking tysabri it was stopped in sept 2018.thankfully no rebound relapse. i have been requiring carers for almost 6 years and the term advanced ms sits easy with me-not for myself but it seems to make it more real without shocking for others. i know i dont need to explain my self to others but a straightforward term makes it easier-for me and them.

so perhaps the length of time since diagnosis is not as important but what it does to you/affects your daily life? like everything else in life-we all have different opinions!

ellie

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Hi June,

In the 1980s my mother developed cancer which rapidly spread to most of her body including her brain. When the doctor told her her he would give her some valium while they sorted out her treatment, she replied, “Strike out valium, write down Champagne.”

Mum was a senior nurse and lecturer in Health Care so she knew better than most people how she would die. She refused the treatment that would have extended her life because she knew that her quality of life would be execrable.

And she spent the last few months of her life in a whirlwind of social activity that was astonishing. When Mum knew that the end was near she took herself off to a hospice, far enough away so that she need not be bothered by anyone except her partner, and died quietly and with dignity.

I think that Sue and Ellie have given intelligent and sensitive replies. I have PPMS and have been in a slow but steady decline since my first symptoms appeared about ten years ago.

It’s inevitable that, unless some other condition doesn’t kill me first, that I will become bed bound and subject the sort of symptoms that go with being unable to move. I don’t see any point of sleeping all day only to be woken up for food and water.

So I hope I shall get a quick death from another reason rather than hanging on. And I would be a waste of resources, just because doctors or politicians don’t like the idea of me dying on their watch.

Best wishes,

Anthony

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