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MS is defined as recurrent and ongoing inflammation within the nervous system. We know that the brain has a great capacity to cover up what’s going on underneath. For every clinical relapse that people have, we know that there are at least 10 new MRI lesions and, even in people who feel that nothing is changing, we can see rumbling changes in the brain. Sometimes people with MS, even when they say they’re static, when you really ask them, there’s a lot of fatigue going on. People may find that they don’t have the stamina that they used to have, that they’re finding work a little bit more difficult, thinking and memory a little bit more difficult. So I think, if you’re under the impression that nothing has changed in your disease over a couple of years, it might be worth asking yourself again ‘has really nothing changed?’ And what we will find is, not that we are going to look to distress people, or give them problems they don’t think they have, but sometimes when we scan, we do get a surprise as to the disease has been active. Dr Martin Duddy, Consultant Neurologist
I think sometimes people put their head in the sand because they are unsure, they don’t know what is out there, they’re anxious, they’re not sure that anybody understands their MS and they haven’t yet been empowered to take control. I’m hoping that this one message will enable those patients to feel empowered. Dr Anita Rose, Consultant Clinical Neuropsychologist
The best way to remain proactive is to have regular follow-up consultations with your MS nurse. Del Thomas, MS Clinical Nurse Specialist
Fatigue is the biggest symptom of MS, and it’s the main reason why people may go part-time with work, or indeed stop working altogether. Many MS services around the UK have developed fatigue-management programmes, or they may do fatigue-management on an individual basis. It’s very much about looking at the daily routine, looking at the contributing factors such as diet, exercise, the temperature, and other various strategies, so it’s really important that you bring fatigue up and discuss this with your health professional. Del Thomas, MS Clinical Nurse Specialist
My top tip for feeling in control is planning. Plan your week, think about your priorities, think about the things you really want to achieve and really want to do against those you don’t want to do. And then create your days around that plan bearing in mind that, if you unfortunately suffer from fatigue, you think about how much energy you’re going to use for each activity. That puts you in control, not MS in control. Dr Anita Rose, Consultant Clinical Neuropsychologist
Learning how to identify a relapse is really important – usually it’s new or old symptoms that are constantly there for 24-48 hours. If they are constantly there, then you need to contact your MS services, wherever that may be. You will be provided with contact numbers for you to be able to do that in your local area. Often, people will think that they are having a relapse if they have a cough/cold, a menstrual cycle, an ingrowing toenail – anything that will raise the core temperature in your body – sometimes this can bring on MS symptoms. So it’s really key to learn how to disentangle symptoms and truly identify a relapse, which will be constant symptoms lasting for 24-48 hours. Del Thomas, MS Clinical Nurse Specialist
The important thing when we see people at an annual review is to check what measurable disease activity we can access, so that’s certainly by taking a story of relapses. People tend to forget about relapses, or sometimes explain them away in other ways, so a good history looking to see whether anything has happened over the year is something we’re looking for. It can be useful for us if patients keep diaries of symptoms or relapses as that means that we’ve got fairly complete information when we see them. We’re looking to see whether people are developing disability with or without relapse and, again, that influences the staging of their illness and the kind of treatments we go for. We know that people often think that some things are just part of natural ageing like problems with their bladder, problems with their mood, and they take that as just part and parcel of MS, but we’re keen to collect those symptoms, and treat them if we can. Dr Martin Duddy, Consultant Neurologist
The advent of DMTs, I think, has induced a lot of hope in people with MS. It was always very hard telling people that they had a disease but there was nothing to offer. When we look at the short-term, there is very good evidence that these drugs do reduce relapses and disability. In the medium-term, within the UK, we’ve been collecting evidence on whether we see a disability reduction and that is coming through at six and eight years now that people who are on the drugs are not as disabled as they would have been if they hadn’t taken them. We’re looking long-term, and worldwide, to collect better information about the 10, 20, 30 year outlook, but the first principles in science and some of the early data would suggest that treating the disease actively at an early stage does prevent some of the later disability. Treatment of MS is all about getting in before problems develop. We find it very hard to turn things back once they’ve happened.
We sometimes see people where a decision has been previously made not to go on a disease-modifying treatment, and they think that that decision is forever. Even the decision not to go on a treatment can be modified and revised. So I think, for anyone with MS in that relapsing remitting period of the disease, a decision to be on a drug needs to be reviewed and a decision not be on a drug needs to be reviewed, at least annually. Dr Martin Duddy, Consultant Neurologist