I think he means the majority of people will have accumulated quite a bit of disability by 20 years. DMD’s do seem to be changing the course of MS which is positive. I’m hoping for 10 years of money earning before things go too down hill for me. Any more will be a bonus.
Just remember the magic words - “On Average”.
On average the first line DMDs reduce both the frequency and severity of relapses by about 30%. Some people do not get any benefit at all, and some do much better.
I went from onset to borderline SPMS in six years. But if you go by averages I died a year ago (standard life expectancy), and that is without allowing for the “fact” that MS shortens one’s life by about five years.
The progression of your MS will go the way it is going to, and there is not much you can do about it. If a DMD works for you at all, it may well delay the development of the disease, and that it to your benefit. Just remember that there is no garantee.
What you can do is all the things you want to do while you still can. Do not put anything off. You may still be able to do it tomorrow, or next year, but you do not know what will happen, and neither does your Neuro. But remember as well, Neuros are just like other people - they do not like to give bad news, so they take refuge in the averages.
Geoff
I have been short changed then… I was dx in 2000 and by 2008 I had to take early retirement, stop driving and get used to a wheelchair. Last year I developed epilepsy. I now have a carer that helps to shower me and get me dressed because I can no longer dress myself. Two years ago I was told by my neuro I had become secondary progressive. This is so not fair. Why has it all happened so much faster for me???
hyder that it is unfair 
Its so different for everyone and can become agressive at any time. It’s hard to remember life without fear.
When did you have your first symptons?
I’m on the bad end too. Had MS in 1992 but so mild that I didn’t get diagnosed until 1999. Deteriorated slowly (mobility problems) until 2007 when I started having relapses. For the next 3 years, I wasn’t much worse after each one, then the relapses got more frequent and I didn’t get much better after each one. I started using a wheelchair/scooter (outside the house) last October. I’ve been on Tysabri since October 2011 - either it’s not doing much for me or I’d be in a really vile state without it. I try to be philosophical about the MS and my life.
Hi!
Thankfully, no two people will experience MS in the same way. It’s as unique to you, as your own finger print- that’s my conclusion!
I was officially diagnosed RRMS in June 2013, following major ‘stroke like’ partial paralysis of my left side that morphed into Secondary Dystonia that continued for 2 months. This happened a few days before I was due to run my next half marathon, so to say it came as a shock is an understatement. An MRI scan showed several rather large masses on the right side of my brain. I likened them to newly formed continents!
My life slowly descended into a living Hell- no question, but I bobbed back up to Earth in September when I entered hospital for my first round of Lemtrada.
As an endurance athlete/ long distance runner, the thought that I may never be able to ‘do my thing’ filled me with horror.
Long story short, I ran my first half marathon (post MS) in March and took part in a 24 hr endurance relay in May. I’ve got another half marathon- ‘Indian Queens’ on 2 July and Cardiff on 5 October.
Life is pretty good currently. I keep my mind and body active and no-body but my family and close friends know that I have this condition. I look very normal indeed.
In 2013, I showed my consultant neurologist an MRI scan that was taken of my brain in 1995 following a ‘co-ordination problem’. At 27 yrs old, I was given no diagnosis and told to ‘go away and get on with your life’. So, I did.
" You had it then too" the Prof said.
My jaw dropped to the floor. I had been living with this condition all those years.
In 'all of those years, I was still fit and still ‘healthy’, but in hindsight, I had experienced four ‘episodes’ that I now know to have been minor relapses. The only times that I ever needed to visit my doctor.
I take my daily supplements and look after my body very well. I take no notice of statistics.
This is my MS journey; nobody elses! Nobody knows what the future holds.
Tracyann x
So lemtrada is doing the trick for you Traceyann? That’s great news, been reading up on it myself, had you taken anything before? I’ve never taken any DMD’s myself just LDN for 4 years so far but quite interested in lemtrada. I’ve had MS for 18 years but mobility problem only started 5 years ago but only had to start using a stick this last year. I was told something very similar about the 20 year mark app666, I think it does mean it’s around this time you could move from rrms to spms but as we all know everyone is different!
I’ve been told it’s unpredictable. I’ve been diagnosed for eight years, though I had symptoms going back several years before then. Three different neurologists have told me my ms is mild, one told me it could be twenty years before I needed a wheelchair, I’ve been using one for seven years, although I get around at home on crutches. I can’t live independently, can’t drive, make a meal, struggle with cutlery, hooks and eyes, buttons etc, now I’m struggling to get in and out of bed. My husband is my sole carer, we have been refused help, I can’t even get an assessment. I pay for a cleaner and for physio. My neurologist has discharged me, I don’t have an ms nurse and have no treatment other than an ineffective course of steroids when newly diagnosed.
Sorry for the rant and sorry if this negative experience upsets anyone.