The second question is from an MSer called Julie, and she asks, how bad can MS get?
I purposely picked this question because I actually think it’s an all-encompassing question and one that is extremely difficult to answer from a health professional viewpoint.
It’s very much a balance of being realistic with people and not insulting someone’s intelligence in relation to that. Very rarely do people die from MS, but people can die with MS. Having said that, as in any lifelong disease, you can get extreme variants of that, but for the vast majority of people, it isn’t fatal. But it’s a frightening thing and I think one of the things, it is totally and utterly unpredictable, and that makes it very difficult for us to say to people how they’re going to be in five years, ten years, 15 years’ time. We do, we can use our experience, you know, we’ve worked in MS for a long time, there are research studies looking at what they call natural history of the disease, but it’s very individualistic and it’s difficult to know, you know, because unfortunately people don’t just get MS, you can get other things, so it’s putting all that into balance and when you’re newly diagnosed, trying to take all that in, can be difficult.
So that sounded like a difficult question to answer on two fronts: number one, because it could be fatal, so that’s an area within itself, and then number two, it sounded like it’s difficult to track the individual journey that someone’s about to go on.
Yeah. I think coming back to the first bit, as I say, you read all the papers and it’s very, very… it’s usually a rare variant of MS that only affects a very small percentage of people that means there is an extremely rapid progress and unfortunately people can die, and I don’t want to scare people, but they can google it and it’s out there. But putting that into real world, that is very, very unusual and people tend to live a long life and it’s often things of old age, other conditions that impact on the MS. But we’ve also got to remember we’ve got a lot more treatment options than what we’ve ever had in multiple sclerosis and obviously the trend is to treating early. But it’s not just about the treatment, you have specialist teams around, so nurses, consultants, who have specialised in multiple sclerosis, that we didn’t have years ago. So it’s actually the health promotion, the self-management, so it’s all that that comes into play and I think it’s about helping people live heathier and weller with multiple sclerosis and I think that is a key component of our role, but it is unpredictable and it’s having the support mechanisms in place so that people are seen if they’re not as well, that we respond to them quickly. Yes, some things we can deal with over the phone, but it’s looking at the relapses and the whole package and making sure that people are seen by the appropriate people at the appropriate time.
Thank Carolyn, sounds like those are in place.