Hi all,
I posted this in the ‘Everyday living’ forum but, on reflection, thought people in this forum might need it just as much/even more!
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:
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The chances of having a relatively ‘mild’ form of MS are good.
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You should be able to continue for well over 20 years before needing a cane to help with walking.
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Statistically, you should never need a wheelchair.
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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/probable MS 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:
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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.
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93% of those with EDSS < or = 2 at 10 years were < or = 3 at 20 years (Lyon study).
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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.”
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82% of GA-treated patients were still fully ambulatory without aids at 22.2 years after disease onset.
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Mean time to EDSS 8 (wheelchair): 33 years in one study (London, Ontario), 52 in another (Olmsted county). These were all untreated.
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After 15 years less than 25% of people needed a cane; after 40 years only 20% needed a wheelchair.
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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.
James