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People with MS die on average at age 66

I have MS, and had to stop working as a doctor because of MS-related fatigue

What does the MS Society think about this weeks BMJ report that people with MS die, on average, age 66?
See : Figure 5 in https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil...
I had been told that death occurred ‘a few years earlier’ with MS than in the general population.
66 is not ‘a few years’ earlier!
This is much worse than for other neurological conditions : “The mean age of death among people with a neurological disorder was 74—four years less than the mean age of death from all causes”
I’m going to read the full report – its at https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil...
I especially want to see if there is any time trend data
But this does raise very significant issues for me
Including about the DMARDs – which I’ve avoided taking for 30 years.
Are they disease modifying, but not death modifying?
Or would it be / is it even worse without them?
What do you think?

And why aren't you commenting on the BMJ rapid response system?

If you'd like to discuss the above report, please feel free to contact our Helpline Team (helpline@mssociety.org.uk) who will then be able to forward your enquiry on to the relevant team. 

Thanks,

Oliver - admin

I have MS

Statistics are not relevant to me.

There is more stress and tension created by the medical profession than anything else.

I am too busy getting on with the life that I have to worry about the afterlife.

Thanks for reading,

Anthony

Dying at an average age of 66 doesn't seem too bad, does it?

Factoring you spend the last 15 years of that, paralized & being fed through a straw, having your nappies changed & losing all your dignity as a human. Having to trust strangers with your well being or putting a burden on those we care about.

I chose to live & stop relying on others when I left home & both my parents died since.

Now I struggle to walk & talk. All my savings were stolen & any ideas I have to get away from the worst part of society are stolen too. Some people with self inflicted problems surround those with problems, in the hope of an easy life.

I avoid people now! MS is awesome. My GP didn't even know what MS was. I'd had PPMS for 10 to 15 years before being diagnosed. I'm 48 now, so judging by this statistic I have 18 years left & I'm supposed to rely on someone else finding the cure. I think I'll just get on with it, until I can't & travel to somewhere pleasant.

Terry is getting on with life.

Given I am 58, am still mainly mobile and am not fed by a tube nor using a wheelchair, Im optimistic that I will live beyond 66 - taking into consideration any rampart buses that may have their sights on me or the Big C which has decimated many in my family!!!

 

I don't think they can say one age as finite -it can only ever be an average and I intend to be one of those those who is above the average!!

Anonymous

 why post this to frighten  people

Anon.

The report claims "on average". I don't suppose any of us plan on crossing off the dates on our calender now that’s been posted.
They are but statistics. No different to the statistics given for road deaths, air travel, figures given for smokers versus non smokers etc.
Most people who bother to read these statistics digest the information and "carry on as normal". IE,driving, taking flights, smoking or not, as the case may be. That's why I like this forum. It's varied and informative, funny and sad, poignant and thought provoking and much more besides.
I don't believe the post was intended to frighten. Just an interesting read.

Unless you're 65 I guess!

I decided after a bad accident some time ago life was a lottery, so decided I'd play Sudoku, basing the age I lost a game would be the age I'd 'leave this mortal coil'.

Anyway glad to say having set and completed my challenge I'm going to be here until 93 - so another +40 yrs yet to go for me!

Of course the other 'red buses' I'll need to dodge in the meantime is another matter.

However, if I've gone mentally 'do-lally' by then I'll be on another planet anyway, so who cares!

I have MS

I might win the lottery this week as well.

Who knows what the future holds. The thought of being diagnosed with MS didn't even cross my mind.

Die at 66...??? Oh dear, I’m late again... I’m 67...!!!

I'm 65 now. So that's my job for tonight ........ Write a Will.

And if my Sister thinks she's getting my house, you're in for a shock.

Everything is going to the dogs home.

I have MS

OMG, I’m only 51. I don’t want to live another 15 years. I need to join Dignity in Dying soon. And maybe Dignitas. 

Sue

Anonymous

omg, must get a shift on, I'll be 66 in a few months and I've got the bathroom to finish decorating, the book to write, and a complete revamp of the garden to plan and do. :)

Ha my mum died in February 2018 she would of been 74 in March.
I had my MRI day after her funeral to confirm my MS diagnoses 3 weeks later.
Perhaps There is something to that.

hmm, yes... think after reading this prediction of terminating at 66yrs!  Maybe I will write a bucket list of the things I should accomplish before I arrive at this age!  Starting with bungee jumping or swing from the chandelier! I’m the wrong side of half a century now.  Will I see my pension? Oh well I’ve had a good innings... so far .  Will promise to say farewell when/if the time is approaching.

‘That’s all folks’ .....

says Micky Mouse......

I have MS

MS is a serious illness.

66yrs!  gloomy statistics, which make the DWP's campaigns to keep MSers in the workforce until they drop dead, and cuts to PIP mobility payments appear even more vile.  

On a positive note - how about a campaign to reduce MS falls?

This report highlights 7% deaths due to falls - it's worth getting a powerchair or scooter as soon as you start experiencing poor balance or tripping up. 

Ask your MS Nurse or OT, GP for a falls assessment. No one should die due to a fall.

"1.5.2.4. Falls Between 2012 and 2014, 6,222 people aged 20 and over died with a mention of a neurological condition and a mention of a fall. Accounting for 7% of all people aged 20 and over who died with a mention of neurological conditions. The age and gender profile for those dying with neurological conditions and falls were similar to one another (Figure 12). 7% of males and 7% of females had a mention of both neurological conditions and falls. For the 14,326 all-cause deaths of people aged 20 and over with a mention of falls, 43% also had a mention of neurological conditions."

 

I have had a few nasty falls, luckily I have not broken any bones yet, just really ugly big bruises. I now use a rolator around the house, rather than just a stick. This has helped a lot with my balance and would recommend this to others as a way of preventing falls. I have secondary progressive ms and have just turned 60 so I hope I don't only have 6 more years! Although I have restrictions to my activities I am enjoying learning and improving in my painting hobby! I think it helps to have challenges in activities that I can cope with.

Joanna

well as you say I wont even get my pension, better draw it out to hell with all that tax and enjoy my hard earned pension fund. 9 1/2 years and counting.. lol

I fall so much, I've been thinking of getting springs implanted in my backside.

People die at birth & any time there after. In all kinds of ways. What we should be doing, is forming a life party & getting on with it, to some sounds & a BBQ. I'll have a Root Beer, before it's made illegal by this fruit cake system. Vote Root Beer!

Terry, you have just given me the funniest imagery!!!! I'm coming along to that party.

Watch out for that bus!

I have MS

Life is a sexually transmitted, genetically inherited disease with a 100% fatality rate.

Hopefully with lots of fun bits in betweenlaugh, your a long time looking at the lid, let's not waste it worrying about statistics.

put some banging tunes on and frighten the reaper to death!

My mum's PPMS, she was diagnosed aged 49 and is now nearly 81. Ok her quality of life isn't great but she's still at home with my dad. 

Anonymous

The average lifespan from diagnosis is +36yrs.  Since the majority of MSers get their first symptoms and diagnosis

at 20-30yrs, 66yrs sounds about right.  

Its worth noting that these statistics cover only from 2001 to 2014 so probably the majority must've been when there was little research and treatment in to MS and/or people who may have been diagnosed at a later stage in their life. In any case I wouldnt take notice of the average age deaths and its statistics. It all differs from person to person, and also how would they know they passed away due to MS maybe they might have been run over by a car or had a heart attack etc.

In most other medical related pages they say MS patients life spans are just the same as people without MS.

 

The factor some fail to relate to, is those who's lives are severely restricted.

Someone who lives to 80 in a room, unable to do anything for 40 years, hasn't had much of that 80 years living to their potential. That's why I just get on with it. The lab rats I know, didn't last long & had nothing but worry.

A friend with RRMS isn't even 30 & imagines her life is over already. Unable to walk & too weak to even open doors. No hope of getting married or having a family. Hoping they meet someone who can look after them, for the rest of their life.

Statistics do my head in & peoples view on what living actually is.

I’ve recently been diagnosed with MS

I am still here and I am 67...although of course I was only diagnosed with PPMS at age 64...

Terry...have you thought about getting a pogo stick...just a thought...it wont stop you from falling but just think of the fun...

BladeRunner...same here, everything to the dogs home...

 

Jackie...

I have MS

MS or no MS. Your`e gonna die at some point. Focus on living.

That very true. I'm 29 and it's all new to me been horrible . Everyone is different aswell some peple can go on amd live a relitivly normal life with ms until there alot older and some wull have more hurdles then others. But as long as you do your best to have your treatment eat healthy stay mobile if possible a d stay positive you are giving it a bloody good shot. When I first found out I was so scared my mind was everywhere .i have two young girls and it was horrible :-/ but as time goes on I get more positive amd juat take each day as it comes and deal with anything that might happen when it happens but that's thw same with everything :-) . It does not mean we will die around 60. We can live on just like everyone else xxxx

I have MS

It's quality of life that counts for me.  

People with cancer can die after 18 months. My stepmother died at 57yrs!  

I'm not fussed - I do as I please. My time is my own, since I stopped working. 

Most people with MS stop working after 5 years due to fatigue and increasing disabilities. I did with great relief.

I keep myself busy with hobbies and interests that most folk would not have time for.

And I have more time for my children and ageing mother, which I would not have had, if I had still been working.

Trying to live well - with just the basics from month to month - is hard though under this government.

The financial impact of MS is awful, made worse by these constant ESA/PIP assessment, which

drive so many bonkers. 

So many people with ms go for years without the condition getting worse or having any relapses. I'm just going to stay positive amd think that way . If anything else happens I will deal with it at the time . Life doesn't have to stop because of all this . Make thw most of what we have got :-). Xx

And yes your right thw financial side of it the government are all wrong. Some people need more help thwn others and it's wrong . Of course we all want to have the choice to work but some of us really do struggle amd really can't so there should be more help most definitely xx

I have MS

And of course, many people with MS keep working for more than 5 years. There are ways to manage work even with MS symptoms, there’s Access to Work, plus the Reasonable Adjustments that employers are required to make which can help. 

I worked very hard, all over the country for 9 years with MS before finding it impossible. But lots of people work for 20+ years (or more) after diagnosis. 

MS is not a reason to give up on life or work. And the number of effective DMDs now available should make disability progression slower, or even non existent. 

Obviously, for those who can’t work due to disability caused by MS there are state benefits. It’s so true that they become harder and harder to qualify for, but should you need them, it is possible to get effective advice and qualify. What I would suggest you always do is keep documentary evidence (ie letters from neurologists and anyone else you see) as this will be useful if you need to claim.

Sue

I have MS

Sue makes some sound points. 

But our doctor's questions remains unanswered: 'Are they disease modifying, but not death modifying?' 

I did start DMDs in 2001 (Beta Interferon 1b), and stopped the injections in 2008, because I was still having

relapses twice a year, with increasing disability and MS on my MRIs.

Is my 'disease modified' - how could anyone say for sure? 

If DMDs were really that effective after two decades of use one might expects to see the average to shift

towards 70+yrs.  

I wonder if the 66yr average just indicates poor quality NHS care, when it come to falls and infections? 

Or is it poverty - there were 50,100 excess winter deaths last year - how many of these folk had MS??

At the moment, the government spends ££ millions on DMDs drugs, whilst cutting social security payments, the end 

result must be more MSers die earlier due to cold related deaths.   More research is needed on this.

I have MS

I think the original 4 injectable drugs (Avonex, Betaferon, Rebif and Copaxone) were OK for some people and many still take them and find they are reasonable at warding off disabling relapses. But they were only on average 30 to 35% effective at reducing the number and severity of relapses. So didn’t do much good for a lot of people with MS.

But the newer drugs are much more effective at modifying disease. And I do believe they reduce disability even if they don’t stave off disease progression. If you’ve had an utterly ruinous relapse while not being on a DMD, which has caused serious disability, you come to accept that the drugs which reduce the number and severity of relapses might have prevented that relapse. Thus they might have ‘modified’ ones disease.

This has nothing whatsoever to do with the age of death. Nor would it affect disease progression. If your RRMS is going to become SP, then it will regardless of DMDs. 

But obviously you are right about poverty causing deaths which could be avoided if people on low incomes can’t afford heating and decent food. And too many people with MS (and so many other diseases and conditions) are finding their benefits slashed by the DWP. 

Sue

What a load of rubbish I am wheelchair bound no water works or bowel control and turn 80 in a few months. I am enjoying my life thank you!!

I have MS

Good for you kieknuk. If only some other's had the same attitude eh. What sort of doctor claims we'll all necessarily die aged 66? A bladdie witch doctor? I'm sick & tired of gloom & doom posts, especially from reasonably fit & well MS people. Negativity only puts us all in the doldrums. This is a great place to air good, bad, one's fears but is not the place to terrify us all. Should we top ourselves now or wait until our mid 60's? A family of 4 young innocent,happy & positive children have recently burned to their death before age 10. It could have been avoided but wasn't. Nothing to do with MS but everything to do with LIFE !!!I I'd prefer to hear of progress (if any) of DMD's or Treatments for ppms rather than a death sentence! NICE are sometimes too cautious, hold a meeting to arrange a meeting and stop us accessing treatments that have proved helpful in other countries.I Oooh I'm SO cross at the impudence & pretentiousness of such claims. Why aren't they investing in treatments??

Anonymous

What is the average of death?  What is it caused by?  Certainly not MS ... as that’s not terminal! 

Having recently been diagnosed with secondary progressive ms was quite scary my cns consultant gives you the facts doctors can miss your symptoms in the early primary stages took me years to get to my diagnosis. I worked and was relatively active but my body was telling me something was wrong I am at the moment filling in the forms for pip which are stressful mentally no one with ms wants to have this so why is it so hard to claim things. Fatigue is a huge factor along with numerous other problems all I was aware was maybe your life expectancy would be 7 years less than others,but I do feel that the government should look upon ms as a disability without questions not having to prove yourself if you are been diagnosed it should be enough.