Hi all, This is my first post on here. I'm newly diagnosed (a few months) and have been taking some time to try and get my head around it all. As part of this, I've thrown myself into research and have found two things that have really helped me: (1) a number of population studies showing, on the whole, that disability progression in MS is often much slower than people fear when diagnosed and (b) some examples of people with MS who have gone on to achieve great things. I thought I would share these in the hope they might help others feel a bit more positive about things; especially the other newly diagnosed people. I should just say that the stats below re: disability etc aren't meant to offend those who are not doing well nor to minimise the impact of MS. Hopefully, however, it brings some context to the fears of those facing up to life with this condition. In a British Columbia population based study the mean duration to needing a cane to assist with walking (EDSS 6) was 27.9 years (that was ALL MSers - it was even longer for RRMSers). 15 years after onset on MS only 21% had reached this stage. Even after 40 years, only 20% of people needed a wheelchair. In a study of people using Copaxone, 82% of those who had continued their use were still fully ambulatory without any assistance after a mean disease duration of 22 years. This is, in fairness, a slightly biased stat as those who stopped using will often have done so because their condition worsened so they had to switch therapies. In a study in Lyon, 93% of those who were EDSS 2 or under after 10 years, remained so after 20 years. All but 2 of these were still in employment. In an Olmsed County, US, study the mean duration to an EDSS of 3 (which is still fully ambulatory) was 23 years. In a Swedish study, 35% of RRMSers hadn't developed SPMS after 40 years and still 28% after 50 years. In a Nova Scotia, Canada, study average time for RRMSers to EDSS 6 was over 35 years. Probably the most favourable population based study was in Iceland. In this 69% of RRMS/SPMSers were still EDSS 0-3.5 after 30 years. After 20 this figure was 81%. Only 4% were more than EDSS 6.5 after 20 years. The authors attribute this more favourable prognosis not with factors unique to Icelandic people but to the fact that their healthcare system picks up more mild cases than many other countries. All in all, one can see from the above that the average duration to needing a cane, for RRMSers at least, is more like 25-30 years than the more often quoted 15. Equally, there is a good chance of still being fully ambulatory after as much as 30 years. Of course, EDSS only tells part of the story and doesn't account, in particular, for fatigue but I hope this gives those fearing for their mobility a real sense of hope. Of note, almost all these studies are of people NOT on any DMD - which ought to further slant the studies even more favourably. Moving away from stats, I found examples of individuals doing well in spite of their condition to be really reassuring. A recent example of note is Courtney Taylor who will play professional American Football for the BC Lions on Saturday for the first time, 4 years after being diagnosed. Other positive examples from a range of fields include Fiona MacTaggart, the current MP for Slough, David MacLean, former MP for Penrith and now sits in the House of Lords. Malu Dreyer has just become the Rhineland-Palatinate State Prime Minister in Germany. Mark Lewis, the lawyer for the NOTW hacking victims is another who was diagnosed over 20 years ago. Neil Cavuto - the Fox TV business anchor in the US was diagnosed in 1996 (and now has SPMS) and continues to be a successful presenter. These are just a handful of people, most a long-way down the road since diagnosis, who have shown how MS does not mean the end of a successful, productive life. I apologise if the above comes across as patronising to the many people on here who already know that MS doesn't mean the end of a successful, fulfilling life but that is a big fear for many newly diagnosed people like me and I know I've found some solace in the above research and inspirational individuals and so I hope by sharing this, others do too.
Hi <a href='https://shift.ms/community/people/phoenix/' rel='nofollow'>@phoenix</a>, thanks for the post- it is always good to read or re-read examples like this- even as a relative 'old-timer' to ms like me! (I was diagnosed in 2006). It is such an unpredictable condition that it's often difficult for medics to give an overview that is honest but not terrifying! To this day the only thing I remember from my diagnosis was the graph I was shown representing the RRMS-SPMS transition and going home thinking, right, I've got 15-20 years and then it all goes to pot! Hope you're doing well, Jane xx
We can't hear enough of this sort of information!!It puts flesh on the reassurances that neuro teams give. <a href='https://shift.ms/community/people/janep/' rel='nofollow'>@janep</a>, I was never given any graph or much info about progression. I remember being told after three or so years that 'I was doing well' and queried from the MS nurse what that meant in concrete terms. She told me that I needed to trust the consultant, that he didn't say things lightly and I should believe him. When I asked her about progression she said that hopefully I would be well for 'many, many years'. I know that nothing is certain but any scrap of reassurance is SO good!