In coming to terms with a diagnosis of CIS/probable MS, I have thrown myself into research (and am trying to be more positive about things than my last post). I’m a bit of a scientist at heart and so I’ve been happy to wade through days and days of ‘Google scholar’ etc and have paid for a huge number of papers etc including longitudinal studies, clinical trials etc. I thought it might help people to see a summary of some of the statistics I’ve been able to collate. If they give just one or two people in my situation or those with more long-standing MS a bit of a boost in terms of prognosis then it will have been worth my posting them. I do think (and I hope people won’t take this the wrong way) these various forums can become a bit biased towards those who are not doing too well and give a slightly negative view of the impact of MS to those trying to come to terms with it. I’m not minimising a very serious condition (far from it, it has knocked me sideways dealing with this situation) but there’s good reason to be positive about outlook.
Every one of these stats is based on a formal research papers as opposed to chinese whispers on forums etc. I’ve rounded up/down in some cases or averaged the results of different studies of the same thing. I realise stats can be challenged and there are probably some studies out there showing a less positive prognosis but I think these should let newly diagnosed people have some context namely:
The chances of having a relatively ‘mild’ form of MS are good.
You should be able to continue for well over 20 years before needing a cane to help with walking.
Statistically, you should never need a wheelchair.
If you wish to continue to work and be active you should be able to, statistically speaking. That’s not to minimise the symptoms outside of ambulation but just to say that odds are you should be able to carry on working etc for as long as that is your priority in life.
Chance of a further clinical event (i.e. symptomatic lesion) after CIS i.e. conversion to CDMS (Clinicaly definite MS as opposed to MRI diagnosed only MS):
There’s an c. 80% chance of having not had a second event at 2 years, with treatment. There’s a 50+% of continuing to be clinically free at 5-6 years and c. 30% chance of being clinically free at 20 years.
Prognosis after diagnosis:
20-40% have ‘benign’ MS (eg 39% in one Swedish longitudinal study were still benign after 20.2yrs) (n.b. benign is a somewhat controversial term - defined in different ways in different studies - and not taking acount necessarily of cognitive as opposed to physical symptoms. ‘Mild’ might be a better terminology). 65% of these people were still in employment after 22 years of disease.
93% of those with EDSS < or = 2 at 10 years were < or = 3 at 20 years (Lyon study).
Median time to EDSS 6 (needing a cane to help with walking) is c. 25 years (28 in two studies - British Columbia cohort and Olmsted county, 23 in another and 'average age of 60 in a third). Disability progression in MS is, to quote one particular study, “slower than previously reported.”
82% of GA-treated patients were still fully ambulatory without aids at 22.2 years after disease onset.
Mean time to EDSS 8 (wheelchair): 33 years in one study (London, Ontario), 52 in another (Olmsted county). These were all untreated.
After 15 years less than 25% of people needed a cane; after 40 years only 20% needed a wheelchair.
28% of people in another Swedish study had still not developed SPMS after 50 years. 40 years – 35% of people hadn’t progressed to SPMS. Even without a DMD, median time to progression of SPMS was 21.4 years (not the more widely reported 10 years). With treatment (GA) 66% were still not in the progressive phase of the disease after 22 years.
Hope this is of help to someone, somewhere. MS diagnosis is hard to get to terms with because, in my case at least, of the uncertainty is leaves people in. However, everyone lives with uncertainty - they just don’t think about it so much. With some of the above in mind, perhaps we facing MS challenges can look forwards with a little less terror and realise that there’s a good chance we might be well for a long time yet.
Ooo James. I do believe will get quite a few replies from folk with different types of MS, berating what you say. Statistics are just that. They appear cold and impersonal.
I am still being tested for MS, and if I do have it, (and it looks like I might well have the PP type)then none of your stats apply to me. I was needing a wheelchair within 2 years and I daresay there are many others who are similar. I am high up on the EDDs scale too.
I do understand where you are coming from, as no-one wants to give the newbies the willies.
But the word prognosis doesn`t fit well with MS, as far as I am aware.
Don`t mean to rain on your parade, but this is my feeling on the subject.
Thankyou for going to so much trouble to post such a long thought out post.
Statistics are fine, but as individuals when ms strikes, it may have been in the background for a number of years, as those with SPMS will tell you. Also if your diagnosed with PPMS, chances are the statistics wont mean a thing as its progression is unknown, same as the rest of the labels. If diagnostic systems were 100% from onset of first symptom and lots dont see their gp or report symptoms, thinking at first they were what everyone else suffered from time to time, therefore they could have had it for a long time pre diagnosis - hence no start date of ms being active.
As Poll says, statistics are fine, but theyre cold and dont reflect real life. Maybe bunching us all together you will find those who can identify their prognosis over time, but its equally likely there are those who can put doubt to what the statistics say.
Government use them, but they never ever reflect ‘real life’ events. Not only that, as we all know, statistics can be manipulated for whatever purpose they are meant for, hence not many take any notice of them.
People are as complex as the molocule, irrational, emotional, and as individual as the next person. There are those who feel pain, some dont, some experience what a lot of us dont, and on the opposite side of the coin, we suffer similar but in varying degrees.
Thanks for your time and effort, however Im sure each mser will wish for a good outlook in their future but as normal human beings, we know anything could change at any point, therefore statistics mean nothing when it affects ones life with disability.
I think it is very helpful to put MS into perspective and with the advent of DMDs the prognosis for many people with MS is even better.
Unfortunately I do not fit neatly into any of the above categories but that is the nature of statistics, they give the ‘most likely’ scenario and individuals may or may not confrom to that. As you pointed out individuals on this forum may well not be representative of people with MS generally.
The time and effort that you have obviously put into this is appreciated. Thank you.
Just to be clear - I wasn’t in any way looking to minimise the troubles of those people doing worse than some of the stats suggest is ‘average’. Statistics are just that - some will do much worse, some much better and some as per the ‘mean’ or ‘median’. My point was simply to put some perspective around things (which was for my own benefit as much as anyone elses as I readily admit I flit on an almost hourly basis from having perspective to being terrified and feeling like my life is in pieces). I sense many people waste the time when they are (relatively) well worrying so much about what they perceive is an inevitable disability when it is neither inevitable nor, statistically, likely to come much before they hit 60 (by which point, chances are most people will have some major health issue to deal with in any event). Every time I come onto this or other forums/MS sites, I see posts/pieces about “child carers” or “DLA” and my mind wonders to a place where I can’t work or support my family and my children are having to feed me… For some people that may be a very sad consequence of this awful condition but people at any stage of their disability shouldn’t feel as if that is inevitable or even likely.
Even with PPMS, which clearly has a much worse prognosis, only 25% needed a cane after 7.3 years and 25% did NOT need even a cane after 25 years (this was based on a study of 352 PPMS patients in Canada over many years). Whilst that is worse than with RRMS, it equally does not mean that PPMS is a one-way ticket to a wheelchair. I just think it is important that people who are struggling with the horrible uncertainty this condition brings should be more aware of some of the upside possible outcomes that lie ahead and not feel as if they are necessarily doomed to disability.
Whatever stage you are all at, I hope you are as well as can be in your own circumstances.
I hope that your research has given you and others some peace of mind. No matter how many times people tell you that “everyone is different” and outcomes are not always bad it is hard to believe. In many ways MS can seem like the loss of hope.
For a decade I fit in the mild side of your statistics but I was always aware that this could change. I was determined not to squander my “walking years” and I didn’t. When I went SP I didn’t look back with regret and wish that I had done more while I could.
While I can see that it may make you feel better to think that you won’t have wheelchairs and wetrooms in your future please don’t be so blasé about it that you don’t make every minute count.
A friend once told me that she visualized it as a line of cartoon people with bombs balanced on their heads. The MSers had their fuse lit. It could be slow burning but it was lit. Not that I think a bomb has gone of in my life – it’s not the life that I planned but it’s OK
With regard to posts on here giving you the heebygeebies I understand that but people don’t post “Hey, I’ve had MS 15 years and I’m perfectly fine” In fact people who are AOK don’t even come here – why would they?
Couldn’t agree more - believe me, I’m far from blase right now! On the contrary, I’m pretty panicked and the stats were to try and calm myself down as much as possible. As per my other post, I’m about to become a father and was trying to get myself in a better place ahead of then. The stats helped me appreciate that if I have MS, it doesn’t mean I’m necessarily heading inexorably to serious disability but it might and I need to make the most of every day.
I think the ‘bombs on head’ analogy is interesting. If you think about it, we all have lit bombs on our head. We all die. I think the difference, is most people don’t notice the lit bombs and go about their daily lives not thinking about it, whilst MSers have been shown the bombs and know they are there. For some, that is partially a good thing, making them make more of the present whilst for others the preoccupation with it makes it a very bad thing. Clearly, as well as bombs on heads, MSers have to live with a variety of ongoing symptoms ranging from mild to terrible which that analaogy doesn’t cover but, for me, the only way I can imagine been able to not allow this to take over my life is to have a fierce focus on the day-to-day and getting the most out of each day and not dwell on what might be in the future. As well as the stats (!) I also have collated a lot of moving and powerful quotes about living in the present. Here’s a couple of my favourites:
Why be saddled with this thing called life expectancy? Of what relevance to an individual is such a statistic? Am I to concern myself with an allotment of days I never had and was never promised? Must I check off each day of my life as if I am subtracting from this imaginary hoard? No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish.”
Robert Brault
“We crucify ourselves between two thieves: regret for yesterday and fear of tomorrow”
Your research is brilliant and it really puts in perspective the statistical prognosis of MS. Thankfully it is the opposite of the quite natural response when say in the Purdy affair ‘Dignitas’ is mentioned.
Although constantly you worry over your diagnosis; it’s only natural. You think ‘Have I been misdiagnosed’ it’s only natural.
When I was in limbo land 40 years ago there was no internet and reading many medical books came to the conclusion I had ‘sleeping sickness’ and working for an airline thought a tsetse fly had stowed away in the baggage from some African Country and bit me.
I seem to be going off at a tangent; sorry. Just to say good work but in context there are in excess of 35,000 MSS members; if say 500 use this website I think that would be an overestimate. This type of work should go in ‘MS Matters.’
hi James i understand you have done a little research out there . i for one hoped and wished that all this were true and that with this disease we could all carry on as though nothing was wrong … unfortunately i don’t work at the moment if i gte up and do something may it be small or large i could guarentee that i would later be in a lot of pain and have severe fatigue that often pits me to bed. therefore making my every day a challenge and i don’t see myself as being one of those who suffers i Ty to fight it and try to be normal and am lucky to have a great family and friends around me to support me i don’t at the moment use a stick but have one with me at all times . and i for one was someone who juggle a job my family and my health and ran nearly every day . im not saying none of these statistics are true but we seem to have enough people eg ms nurses and neurologist trying to pull the wool over our eyes and convince themselves we are ok xxx sami
Thanks you for the encouraging stats (even though they have made me feel a little glum because it seems I am unluckier than I thought!) and, more particularly, for the good common sense on how to try to think about things - you have that spot-on, I think.
Thanks for that info James, I for one found it an interesting read. On my diagnosis last year I threw myself in to internet research and the stat that stuck in my head was that 65% of MS sufferers are in a wheelchair within 10-15 years from diagnosis, which at 31 with a baby and 5 year old, I found pretty bleak. Of course there is such a variety of stories and no one knows, but I think its better to cautiously cling to the better ones for the mean time!
When I was diagnosed, the neurologist told me that 20% of people diagnosed with MS would end up in a wheelchair. This agrees with the statistic quoted by James.
