This short guide is a resource to help people with multiple sclerosis (MS) understand how they can keep their brains as healthy as possible and request the highest possible standard of care from healthcare professionals. It explains how people with MS can put into practice the recommendations from the report Brain health: time matters in multiple sclerosis.
This guide and the report were authorised by an international group of people with insight into the reality of living with MS. The group included people with MS, representatives from patient organisations, clinicians, researchers, specialist nurses and health economists.
The group recommended a therapeutic strategy that involves:
- leading a brain-healthy lifestyle, including treating other diseases
- a plan to monitor MS disease activity to see whether treatment is working
- informed, shared decision-making
- urgent referral to a neurologist and prompt diagnosis
- early treatment with a disease-modifying therapy (DMT), when appropriate
- understanding the importance of brain health at all stages of the disease
Although there is currently no cure for MS, our vision is to help people with the disease to take control and take positive action to maximise their lifelong brain health.
Positive lifestyle choices can help to keep your brain as healthy as possible
Having a healthy brain that functions well is important for people with MS. Here are six positive steps you can take to keep your brain as healthy as possible, whatever your MS diagnosis.
Keep as active as you can
Higher levels of aerobic fitness are associated with faster information processing and preserved brain tissue volume. This usggests that being as active as possible may help to preserve brain health in people with MS.
Keep your weight under control
Obesity is associated with higher numbers of MS lesions (areas of intensive damage) than maintaining a healthy weight.
Keep you mind active
Education, reading, hobbies and artistic or creative pastimes help to protect against cognitive problems in MS when pursued over a lifetime.
Cigarette smoking is associated with decreased brain volume in people with MS, as well as with higher relapse rates, increased disability progression, more cognitive problems and reduced survival compared with not smoking.
Watch how much you drink
Unsafe levels of alcohol are associated with reduced survival in people with MS.
Continue taking other medicines that your doctor has prescribed
If you have other diseases, be responsible for monitoring and managing them, including taking any prescribed medications. Conditions such as high blood pressure, high cholesterol, heart disease and diabetes can worsen the MS disease course.
Regular monitoring should be central to managing MS
Monitoring MS to see whether treatment is working is key to maximising lifelong brain health. Just as a car comes with a plan for regular check-ups and services, the healthcare professionals who oversee your treatment should have a plan to monitor your MS – and to put information about you and your disease into a logbook that they discuss with you.
Relapses and disability progression indicate disease activity – and you can take positive action by helping to monitor them. It can be helpful to keep an MS diary of things that affect your health and wellbeing, such as symptoms (see diagram), side effects and other diseases, so that you can share a full picture with your healthcare professionals.
Above Diagram: Take positive action. Look out for these symptoms, especially the one shown in green, and keep an MS diary to discuss at appointments with your healthcare professionals.
All MS disease activity damages tissue in the brain and spinal cord even if this doesn’t immediately lead to a relapse. There is evidence that lesions (acute areas of damage) and brain tissue loss predict relapses and disability progression. MRI brain scans should therefore be used to look for new lesions. In some clinics it may also be possible to monitor brain tissue loss by using software that is becoming more widely available.
Regular monitoring of disease activity can give early warning that MS is not responding well to treatment. Timing is crucial, and clinical or MRI evidence that disease activity is poorly controlled should lead to a discussion about the possibility of switching to a DMT that acts on the body in a different way.
You play a key role in decisions about your treatment
Choosing how to start a treatment or when to switch to a different DMT should be an informed, shared decision in which you play an important role. You should feel able to discuss your values, needs, limitations, lifestyle, treatment goals and the likely disease course with your healthcare professionals. Topivs of conversation may include employment, starting or extending a family, other lifestyle factors that are important to you, your attitude to risk and feelings about injections, and other diseases for which you are being treated, including the side effects of your current medication. A discussion about the relative convenience, effectiveness, possible side effects and specific safety monitoring of the DMTs being considered is also important.
When people with MS feel well informed about their disease and its treatment and have a good, open, trust-based relationship with healthcare professionals, they are more likely to continue with treatment – and therefore less likely to experience relapses. A well-informed and proactive collaboration with your healthcare team is therefore an important part of managing your MS successfully.
Time matters at/very near to diagnosis
To maximise lifelong brain health, treatments and management of MS need to start as early as possible – and this requires a prompt diagnosis. Generally, a person experiencing symptoms consistent with early MS will seek advice from their family doctor/primary care physician or a hospital. Once the possibility of MS has been recognised, an urgent referral needs to be made to a neurologist – a doctor who specialises in diseases of the nervous system.
Prompt diagnosis enables early treatment
Multiple sclerosis is a complex disease. A neurologist with a special interest in MS, together with their team, will be best placed to provide a diagnosis and an integrated approach to care and management. Such neurologists have broad experience of the long-term management of MS and in-depth knowledge of the latest diagnostic criteria, treatment options and monitoring processes. MS specialist nurses are key team members in many services. They can help to improve knowledge, confidence and the ability to cope, provide emotional support and are highly valued by people with MS.
It is now possible to diagnose MS earlier than ever before, thanks to evidence from MRI brain scans. Diagnosis now happens at least 10 times more quickly than in the early 1980s, and about one in five people who have had a single relapse can receive a firm diagnosis from their first MRI scans. For others, further appointments for MRI scans and clinical examinations will ensure that a diagnosis can be made as soon as possible. A prompt diagnosis means that people with MS and their healthcare professionals can start to treat and manage the disease as early as possible.
Early treatment with a DMT can reduce disease activity
In people with relapsing forms of MS, starting treatment with a disease-modifying therapy (DMT) early in the disease course is associated with better long-term outcomes than delaying the treatment. Different DMTs act on the body in different ways and each is associated with a particular set of benefits and side effects. Choosing the most appropriate DMT for you is therefore something to talk about with your healthcare professionals, along with how to lead a brain-healthy lifestyle.
Background: the brain health perspective on MS
In multiple sclerosis, the body’s immune system mistakenly attacks and damages tissues in the brain, spinal cord and optic nerve (the central nervous system). Although it is normal for healthy adults to lose small amounts of brain tissue as they get older, this process happens more quickly in people with MS. For many people with the disease, this causes physical disability, fatigue and cognitive preoblems (e.g. difficulties with concentration, memory and learning new things).
MS is often diagnosed in people aged 20-40 years. The exact range of symptoms experienced by each person can vary, depending on the location of tissue damage in the central nervous system. In addition, for many people with MS, areas of intensive damage (known as lesions) may noticeably disrupt nerve function and lead to attacks of worsened symptoms and impairment (known as relapses). All olesions contribute to tissue loss even if they do not cause a relapse.
The brain is a remarkably flexible organ. When learning new skills, such as speaking a foreign language or playing a musical instrument, it can recruit new areas to use for these tasks. In a similar way, if part of the brain has been damaged, new areas can be recruited to help with the tasks previously performed by the damaged area. Thus, new areas of the brain can be recruited to compensate when MS causes damage to brain tissue.
The capacity of the brain to adapt is known as neurological reserve, and the more neurological reserve a brain has the healthier it is. However, it is now known that MS can be active even when someone is feeling well. Research has shown that only about one in 10 lesions lead to a relapse, and the other, less noticeable damage can also be ongoing. So, even if someone is not experiencing new or worsening symptoms, the brain may be using up some of its neurological reserve to compensate for damage. If all of its neurological reserve is used up, the brain can no longer recruit new areas and the symptoms of MS are more likely to progress.
Neurological reserve is a valuable resource that plays a large part in having a healthy brain that functions well.
Above Diagram All MS disease activity leads to brain tissue loss which uses up valuable neurological reserve.
- MS disease activity causes lesions and other less noticeable damage tat lead to faster tissue loss than usual.
- All lesions cause tissue loss; if a lesion noticeably disrupts nerve function, it also leads to a relapse (an attack of worsened symptoms and impairment).
- The brain uses up its neurological reserve as it recruits new areas to help with tasks previously performed by damaged areas. (neurological reserve plays a large part in a having a healthy brain that functions well.)
- The symptoms of MS are more likely to progress when all neurological reserve is used up.
Contributors to the report:
- Gavin Giovannoni
- Helmut Butzkueven
- Sahayl Dahib-Jalbut
- Jeremy Hobart
- Gisela Kobelt
- George Pepper
- Maria Pia Somani
- Christoph Thalheim
- Anthony Trabouisee
- Timothy Vollmer
Share the Love
This post has been optimised with images for sharing on Facebook, Twitter and Pinterest. Spreading the word about how crucial brain health is for multiple sclerosis is paramount if you know anybody with this debilitating disease.