Re comment: “Is PPMS rare in young people or is it somewhat common. If it isn’t common then why have so many young people actually developed it. Also, are young people better able to stave off disability due to PPMS?”
About PPMS
1. Approximately 15% of MS’ers have PPMS.
2. The average age of onset is 39 years of age.
3. 95% of MS’ers with PPMS will have an age of onset of between 19 and 59 years; therefore it is not that uncommon to develop it at a young age.
4. On average PPMS progresses as fast, or as slow, as SPMS.
5. The younger you are the better the prognosis in terms of time it takes you to reach a specific disability milestone, for example needing a walking aid. This is not necessarily very helpful as the MS is with you for life and you will eventually get to that milestone even though it may take a bit longer.
If you are interested in reading more about the natural history of PPMS I suggest the following paper, which is free to download.
Prof G,I read the article – grim reading!Does this mean all with MS which goes progressive get to EDSS10?From my reading of the article it looks as if the progressive forms are pretty much all the same! I was under the impression that Drugs such as Tysabri and Alemtuzumab affected diability progression (slowed). But the article seems to suggest that attacks have no real link to the neuro-degeneration.Uncomfortable reading for those with MS. HELP! Post something to cheer me up for the weekend.
Prof G,I think those with the disease have a pretty good idea of how bad this disease is / gets etc. I don't think this will be news to anyone with the disease (we live with the symtpoms on a daily basis).I sort of agree with the "no good news poster". We alwways seem to be at the cusp in terms of a breakthrough, but never quite get there. My neuro told my in 2000, they there'd be a cure by the end of the decade! I'm guessing others have heard similar things over the years. We were alos told "there's never been a better time to get MS".I'd like some sense of when treatmetns for progressive MS might hit the streets. Slightly down regarding treatments to reverse disability. My MS nurse told me in 2005 that stem cell treatment were on theier way. I need to get my head round the fact that the walk in the country, game of badminton etc are one forever!
“We find no basis for the claim and apparently widespread belief that [Primary Progressive MS] has a poor prognosis unless this is broadened to all progressive patients. Accordingly it might be deduced that the contribution to long-term disability from relapses is minimal, given the virtually uniform survival curves seen for progression following one, multiple or no exacerbations.” Brain. 2006 Mar; 129(Pt 3):584-94This means that all MS is pretty much the same. Progression is progression. PPMS and SPMS may as well be the same disease because they have the same end result, and the conclusion isn’t a happy one, so yes, depressing reading indeed. Folks with progressive MS are sort of doomed according to this paper.This paper was interesting. It was also boring in parts. What it did do is raise more questions about PPMS than answer them.I have to say that progressive MS is a fascinating subject of study. I can understand why it bewitches you Prof G.Here’s hoping you can give us happier reading material soon. Have a good weekend and let's hope you find a cure by Monday morning.
Re: "My neuro told my in 2000, they there'd be a cure by the end of the decade! ….My MS nurse told me in 2005 that stem cell treatments were on the way."This is what I mean about managing expectations and not over-hyping the field. When I say this, however, a lot of you MS'ers, get the downer on me. But I will stick to my guns; translational research (bench-to-bedside) is a time intensive process there are no quick solutions.
Re: "Does this mean all with progressive MS get to EDSS10?"Yes and No. Although EDSS 10 means death, not all MS'ers get there due to their MS. Most MS'ers die from other causes. There is a joke in medical circles that states: "Life is terminal illness that is sexually transmitted". As we are all going to die at some stage the more important questions are: (1) the cause of death? and (2) how we die? For MS'ers the real issue should be around quality of life. We as in "society" assume that a person who is disabled can't have a good quality of life. This is such a flawed assumption. I look after many people with MS who despite being disabled have fantastically rich lives; lives full of hope, ambition, happiness, fulfillment and above all a sense of self worth. In fact some MS'ers have said to me that MS has given their lives meaning they never had before they developed MS. You often need to lose something or be threatened by its loss to appreciate its true meaning. Which is why I try and never take things for granted and I try and appreciate what I have got. There will always be people better off than you, in the same way that there will always be people worse off than you.
Thanks a ever for your honestreponse."You often need to lose something or be threatened by its loss to appreciate its true meaning."I've heard soem refer to MS as the disease of losses – job, mobility, independence, hobbies / sports, relationships.What's different is that the losses just keep building. A friedn who lost an arm in a motorcycle accident took it very badly but learned to cope with that loss. More difficult in MS as they don't stop and allow you to adjust. That's why a treatment to slow / stop progression is so vitally needed.You are right about quality of life and someone living with MS in a positive way. But it's also a personality issue. I got MS at a key point in my life (career, just started a family etc). I've lost all my sports (and the friends who came with them). I also took great care of my health. So the adjustments as I go forward are massive – I can still recall (8 years ago) the tennis matches on a Saturday, the country walks on a Sunday. Too many losses / too quickly / no second chance. Priot to MS my life was like eating steak and now its the equivalent eating dogs faeces. There really is no comparison. I suspect any future decisions I make will be based on an assessment of how much I value life. So I take my hat off to those who tackle this disease head on and make the most of it, but I suspect I fall into the other pool of sufferers who remember a good life and have placed a limit on how far I will allow this disease to take me. While life is terminal, I'd prefer to go at 75 of a heart attack!
re: "95% of MS'ers with PPMS will have an age of onset of between 19 and 59 years."A 19 year old can get PPMS! Shocking statistic. Has this actually ever happened? If it has then it feels so unfair. I at least got it after 50 when the whole job and family thing were in place. A 19 year old with PPMS probably will never get do these things.
My girl did get first symptoms about age 17 … Now she gave PPMS . I am devestadet and she , it is so unfair I can not express words. So what can she expect of her life developing the PPMS so early ? Any advice ?
Re "A 19 year old can get PPMS! Shocking statistic. Has this actually ever happened?"I look after a lovely you woman, who developed PPMS at the age of 14. Yes, it can happen but it is rare. The actuarial analysis (number crunching) states that ~1.25% of the MS'ers with PPMS will develop their disease before they turn 19 and another 1.25% after the age of 59.
RE "I look after a lovely you woman, who developed PPMS at the age of 14."That's terrible. Poor girl. This example has made me feel bad about complaining so much about my own MS.Let's all hope for better things to come.
"lives full of hope, ambition, happiness, fulfillment and above all a sense of self worth" At the moment i'm struggling to help my teenaged child hold on to some of this, after the almost total loss of athletic talent, falling of academic grades, etcCan you offer any advice or research on this?
Re: "Can you offer any advice or research on this?"It is very difficult to give specific clinical advice on a blog without assessing your child and having all the information at hand. A separate off-line conversation would be the best route at this stage (please see contact information).
Sorry that i wasn't clear. My question was not about clinical advice but on staying positive and confident and avoiding depression & bad temper. Is there any advice on how to hold on to "hope, ambition, happiness, fulfillment and above all a sense of self worth"
Re: "Is there any advice on how to hold on to "hope, ambition, happiness, fulfillment and above all a sense of self worth""Apologies for missing or avoiding this question. No specific advice. I do however employ a strategy of spreading hope. There is always something that can be done to improve the quality of life of someone with MS and there is always promising developments in the pipeline to discuss. We have to view life as an endless stream of technological improvements, the aim of which is to improve our existence. I am aware that things take time to emerge, but there are no short cuts if we want to get things right.