@Tryingtostaypositive

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Tryingtostaypositive

Prognosis and MS severity

Hi all, Some of you may have read some of my (often incredibly long!) posts before, based around natural history studies. I am always curious to know (a) how my MS is compared to others and (b) what is likely to happen to me in the future! As you will know, MS is one of the most varied conditions there is in terms of how it impacts upon people - for every person in a wheelchair there is someone else running marathons (incidentally - I read yesterday of a lady with MS who is half-way through running a MARATHON EVERY DAY for a year plus one i.e. 366 marathons in 365 days - insane!!!). There's a great resource I've come across called MS base: https://www.msbase.org/msbase/en/msbase/mscurves If you select your 'type' of MS, it then plots 3 curves showing the 25th, 50th (average) and 75th centiles. You can then plot your own (if you know your EDSS and disease duration) and see how you compare) eg if you're EDSS 3 and have had MS for 10 years it will say 62% if you hover over where you've plotted (meaning, out of 100 MSers, 61 will be doing better than you and 38 worse). If you don't know your EDSS, google it and you can 'guesstimate'. Key EDSS points are 0-3.5 (totally mobile - outside of an acute relapse), 3.5-5.5 (walking unaided but with increasing difficulty), 6 - walking with aide (eg cane), 7 wheelchair use, 8 - pretty much permanent wheelchaire. The registry is based on over 20,000 entries and only neuros can update so it is reliable. It shows us some interesting things, for example: After 20 years the 'average' EDSS for RRMS is just over 3.5 meaning 50% of all MSers are still fully mobile (i.e. no walking difficulty) after 20 years. 25%, so 1 in 4, are still under EDSS 2 which is only 'minimal disability in one functional system'. If you're newly diagnosed and wondering what will happen, it should be really reassuring to see 25% of people after 20 years are barely affected by their MS. If you need a cane after 10 years (EDSS 6) then you are worse than 91% of MSers and only 8% of MSers on the registry needed a wheelchair after 20 years. The stats, as you'd expect, are worse when you plot the PPMS graph, but even here around 50% can still walk without an aid. This, like to natural history studies I've mentioned, does not take account of fatigue or cognitive issues but is a very interesting way to look at MS. Another study suggests that once on a particular 'course' of MS, it is likely you'll stay there so if you're 'mild' on this curve, you're likely to remain so. One theory I have is that active, online MSers are usually at the more severe end of the condition's spectrum - I'd be interested to see how people on here fare (although I'm an exception currently at EDSS 0). Perhaps a quick poll would be interesting? 1. How long since your first definite symptoms of MS started? 2. What's your current EDSS (best guess) and do you walk (a) just as before your MS, (b) with some difficulty, (c) with an aid or (d) do you use a wheelchair most/all the time? 3. If at all, how long after your onset of symptoms was your mobility first permanently affected (i.e. not just temporarily within a relapse)? This study says it should be 20 years but I suspect few people on here have had symptoms for that long and many have walking issues. Mine, to kick us off, is: 1. Less than 1 year 2. EDSS 0 currently (meaning no objective neurological signs on exam, although I do have symptoms on a daily basis) and I walk no differently than before MS (according to the curve, 1 in 10 MSers with MS for a year will also have an EDSS of 0). 3. n/a Anyone else care to join in?