Actelion MS

Are you ready to get a glimpse of what it is like to live with MS?

Understanding MS

“ONE OF THE HARDEST THINGS FOR PEOPLE TO UNDERSTAND IS HOW MS IS COMPLETELY UNIQUE TO EACH INDIVIDUAL. NO TWO PEOPLE ARE THE SAME. AND THERE IS A HUGE SPECTRUM OF SEVERITY. I TELL PEOPLE THAT JUST BECAUSE THEY KNOW ME, DOESN'T MEAN THEY KNOW MS.”

PATIENT

People who are diagnosed with Multiple Sclerosis (MS) can react in very different ways. For some people, the diagnosis will come suddenly. For others, diagnosis may come at the end of a long period of unexplained symptoms and possibly even tests and investigations. Either way, for some the diagnosis will be a shock, whilst others might be relieved that they finally know what is wrong. A diagnosis of MS is also likely to impact on family and friends.

MS is a very variable condition and it is difficult to predict how it will develop in the longer term. Many people with MS find this uncertainty to be one of the most difficult aspects to live with.

MS can cause varying degrees of disability. However, a variety of treatments is available to delay the progression of the disease and many of the symptoms of MS can be effectively managed. As a result, many people with MS are able to continue living positive, active lives despite their condition.

Unique

“One of the hardest things for people to understand is how MS is completely unique to each individual. No two people are the same. And there is a huge spectrum of severity. I tell people that just because they know me, doesn't mean they know MS.”

Patient

MS is a lifelong neurological condition (a neurological condition is one that affects the nervous system) that affects the brain and spinal cord. It is often diagnosed between the ages of 20 and 40.

After traffic accidents, MS is the greatest cause of disability in young people.

MS can affect people in different ways and over time can cause a wide range of possible symptoms, which can interfere with many of the everyday activities and functions that healthy people take for granted. Walking, talking, working or simply coping with everyday chores are just some of the areas that can be affected as the disease progresses.

There is no cure for MS but a variety of treatments is available that can delay disease progression and many of the symptoms can be managed effectively. Research into treatments is ongoing and the outlook for MS patients is improving all the time.

What is MS?

What does the term ‘multiple sclerosis’ mean? How does the central nervous system (CNS) work and how is it affected by MS?

“WHEN I EXPLAIN MS TO PEOPLE WHO DON'T KNOW ABOUT THE CONDITION, I MAKE IT PRACTICAL. I RELATE NERVES TO AN ELECTRICAL WIRE WHERE THE PLASTIC CASING IS BEING ERODED AND THE METAL WIRE UNDERNEATH IS EXPOSED AND DAMAGED. I FIND THAT HELPS PEOPLE TO UNDERSTAND WHY NERVE SIGNALS AREN'T GETTING THROUGH PROPERLY AND, THEREFORE, WHY THE BODY STOPS WORKING PROPERLY.”

PATIENT

Types of MS

“IT CAN BE SCARY NOT HAVING CONTROL OVER WHEN OR HOW A RELAPSE WILL HAPPEN. WHAT IT WILL AFFECT. HOW LONG IT WILL LAST. THE UNCERTAINTY WAS THE MOST DIFFICULT THING I HAD TO COME TO TERMS WITH.”

PATIENT

MS is a condition that is generally characterized by periods of relapse (episodes of new or worse symptoms) and recovery (also called remission), when symptoms improve or disappear completely. However the disease progresses slowly and in most patients a full recovery can no longer be achieved at some point. Some people experience progression of symptoms and no type of ‘recovery’ from the start.

There are three main types of MS: relapsing remitting MS (RRMS), secondary progressive MS (SPMS) and primary progressive MS (PPMS). A mild form of RRMS is sometimes called benign MS.

  • RRMS

    The majority (around 85%) of people with MS are diagnosed with RRMS. People with RRMS have on average one or two relapses a year, each lasting from one or two days to several weeks. Symptoms usually improve or sometimes disappear completely between relapses.

  • SPMS

    SPMS: is a stage of MS which follows RRMS in many cases and is generally defined as a sustained build-up of disability, independent of any relapses.

  • PPMS

    About 10-15% of people with MS are diagnosed with a form in which symptoms get worse from the start with no periods of recovery.

  • Benign MS

    The term ‘benign MS’ is sometimes used to describe a type of RRMS with very mild attacks and long periods of remission.

What causes MS?

The precise causes of MS are not fully understood but it is thought to be an autoimmune disease that is triggered by a complex combination of genetic factors and environmental risk factors, such as an infection.

  • What is an autoimmune disease?

    • Our immune system is our main defense against infection.
    • It is designed to identify and attack potentially harmful invaders such as viruses and bacteria, using special white blood cells and antibodies.
    • In autoimmune conditions, the immune system becomes “faulty” and attacks healthy tissue as if it were an invader.
    • In people with MS, the immune system starts to attack cells within the CNS, specifically the myelin sheath.
    • Other examples of autoimmune diseases are type 1 diabetes, rheumatoid arthritis and Crohn’s disease.

  • Gender and genetic factors

    • Women are at least two to three times more likely to have MS than men, the reasons behind which are not fully understood.
    • MS is not considered an inherited condition.
    • However, a person who has a relative with MS has a slightly increased risk of developing the condition.
    • Some genes increase the risk of developing MS but other factors are usually needed to trigger the condition.

  • How is MS triggered?

    • Research suggests that an infection may act as a trigger for MS in some people but it is not yet known if a particular virus, or combination of viruses may be the trigger.

  • The role of vitamin D

    • Research has indicated that low levels of vitamin D may be involved in the development of MS.
    • This vitamin is manufactured in the skin when it is exposed to sunlight. Rates of MS are higher in countries that are further away from the equator and where people have lower exposure to sunlight.
    • This area requires further research in order to establish a firm link.

  • Lifestyle factors

    • Smoking has been shown to increase the risk of developing MS. People with MS who smoke are encouraged to stop to slow down the progression of the disease.
    • Obesity is also a risk factor for MS, particularly for people who were obese in childhood or as young adults. As with smoking, maintaining a healthy weight is a risk factor that people can change.

  • Potential relapse triggers

    • Stressful events, such as bereavement or divorce, have been highlighted as potential triggers for relapses/flare-ups of existing symptoms in patients diagnosed with MS.
    • Pregnancy: the risk of relapse increases in the months immediately after giving birth, although many women find that they have fewer relapses during pregnancy.
    • Temperature: some people find that heat can trigger a flare-up, while for others cold is more of a problem.
    • Infections: MS symptoms may flare up following an infection, such as a bladder infection, so it is important to treat infections promptly. Serious infections can trigger a completely new relapse.

Signs and symptoms of MS

“FATIGUE FEELS LIKE YOU'RE WALKING THROUGH QUICKSAND IN WELLIES FILLED WITH WATER WHILE YOUR HEAD IS STUFFED WITH COTTON WOOL. IT'S ALL CONSUMING AND OVERTAKES BOTH YOUR BODY AND MIND.”

PATIENT

MS causes damage to nerves in the brain and/or spinal cord and as these nerves control functions throughout the body, MS can cause a wide range of symptoms.

There is a huge variation from person to person in the type of symptoms experienced, their severity and how often they occur. No two people with MS are the same. A person with MS can also experience major changes in symptoms from day to day or over the long term.

It is important to remember that some people may only experience a few of these symptoms, some may experience many.

  • Common symptoms of MS

    • Fatigue – this is one of the most common symptoms of MS
    • Problems with eyesight (blurred or double vision)
    • Bladder problems
    • Bowel problems
    • Numbness or pins and needles
    • Muscle weakness
    • Loss of balance or lack of coordination
    • Muscle spasms and stiffness
    • Depression or mood swings
    • Cognitive changes – problems with concentration, memory and mental processing of information
    • Problems with speech and swallowing
    • Muscle or nerve pain
    • Tremors

  • Who gets MS and how common is it?

    • MS is more common than many people realize. It affects more than two million people worldwide and approximately 700,000 people in Europe.
    • Most people are diagnosed with MS in their 20s and 30s, but it is also diagnosed in younger and older people.
    • MS is about 2-3 times more common in women than in men.
    • Generally speaking, MS is more common in areas farthest from the equator, particularly in European and North American countries
    • Prevalence varies across Europe: the highest prevalence is 189 per 1,000 in Sweden and the lowest is 22 per 100,000 in Albania.

What is the outlook for people with MS?

“I WAS SCARED WHEN I WAS FIRST DIAGNOSED. I KNEW MY LIFE WOULD CHANGE FOREVER, BUT DIDN'T KNOW EXACTLY HOW.”

PATIENT

MS is a lifelong condition but it does not usually affect life expectancy; people with MS can expect to live as long as anyone else. However, it can cause varying degrees of disability and can impact many aspects of life.

As we have seen in the section on MS types, it is difficult to predict how MS will progress in a particular person, making it difficult to plan the future with confidence. Many people with MS struggle to cope with this uncertainty.

Many people assume that people with MS have severe walking difficulties or need to use a wheelchair but in reality, most people diagnosed with MS do not need to use a wheelchair on a regular basis.

Research into new treatments for MS is a very active area and the outlook for people affected is improving all the time.

Diagnosis and treatment of MS

MS can be difficult to diagnose. Many of the symptoms, such as fatigue, are not specific to MS and symptoms can come and go.

Unfortunately, diagnosis is often a long, frustrating process. There is no single test to diagnose MS and to some extent, diagnosis is a process of elimination. Most people have a series of tests and investigations to rule out other conditions and to identify areas of scarring in the CNS. These tests are usually carried out under the care of a neurologist (a specialist in conditions of the CNS).

Diagnostic tests

Patients may have one or more of the following tests:

  • Detailed medical history

    This is used to identify previous health problems and to build up a pattern of symptoms. Tests may be carried out to rule out other conditions and to check key functions such as balance, reflexes and coordination.

  • Magnetic resonance imaging (MRI)

    MRI scans are commonly used to detect the presence of the plaques or lesions associated with MS in the brain or spinal cord.

  • Lumbar puncture (or spinal tap)

    This involves taking a small amount of the fluid that flows around the brain and spinal cord to check for antibodies or abnormal proteins.

  • Evoked potential tests

    Small electrodes are attached to the body to measure the speed of messages along the nerves.

Researchers

What treatments are available for MS?

There is no cure for MS but a variety of possible treatments is available depending on the type of MS diagnosed and the kind of symptoms patients show. Sometimes a combination of treatments is used and it may take time to find the best approach for an individual patient.

There has been a great deal of research into treatments for MS in recent years and major advances have been made. This means that the outlook for people with MS is improving all the time.

There are three broad categories of treatments: those designed to relieve MS symptoms, medicines used to manage MS relapses and treatments that aim to slow down the course of MS.

  • Managing MS symptoms

    A range of treatments is available and these are often very effective at treating the symptoms of MS. The key options are:

    • Drug treatments: treatments are available to treat specific symptoms such as bladder or bowel problems, fatigue or pain.
    • Therapies: physiotherapy can help to improve mobility and improve problems such as dizziness and muscle spasms, cognitive behavioral therapy can be used to manage depression and speech and language therapy can help to manage speech and swallowing issues.
    • Self-management techniques: these can be helpful in managing symptoms such as fatigue.

  • Managing MS relapses

    • Not all relapses need treatment but in some cases a short course of high-dose corticosteroids (steroids) is used to speed up recovery.

  • Disease modifying treatments (DMTs)

    • Disease modifying drugs (DMDs) aim to reduce the number and severity of relapses. They are currently only suitable for patients with relapsing remitting MS.
    • DMDs act on different parts of the immune system to slow down the nerve damage.
    • DMDs cannot reverse existing damage but they may help to prevent further damage from developing.
    • Some DMDs are given in the form of injections that are usually administered at home, while others are taken orally (by mouth), and some are given as infusions in hospital.
    • Each patient will be advised on the best option for their individual case.

Burden of MS

“MS CAN AFFECT EVERY ASPECT OF YOUR LIFE - WORK, SOCIALIZING, SPORTS, RELATIONSHIPS.... THERE'S NOT A SINGLE ASPECT OF YOUR LIFE IT DOESN'T HAVE THE POTENTIAL TO TOUCH.”

PATIENT

As MS is so variable, it is difficult to predict how it will affect any one person. Some people with MS are able to carry on with life the same as always for most of the time. Others will have to cope with significant disability and, in some cases, MS can have a profound impact on many aspects of daily life from employment and social activities to relationships.

  • Work and employment

    • 70% of people with MS are diagnosed during prime working years and so it can have a major impact on employment and productivity.
    • The European Multiple Sclerosis Platform has looked specifically at the area of MS and employment and reports that: 75% of people with MS feel that the condition has affected their employment and career opportunities and 80% stop working within 15 years of the onset of the disease.
    • Being unable to work can affect self-esteem and can cause financial hardship.

  • Emotional wellbeing

    • Not all relapses need treatment but in some cases a short course of high-dose corticosteroids (steroids) is used to speed up recovery.
    • The uncertainty associated with MS can be difficult to cope with and many people with MS experience depression or anxiety.
    • Some symptoms, such as fatigue, are ‘invisible’ so other people may not realize the impact MS can have.
    • Physical symptoms, particularly bowel and bladder problems, can affect self-esteem and have a direct impact on relationships.
    • It can be helpful to accept that life will be different, but it is definitely not over. It is important to focus on what is still possible and to take each day as it comes.

  • Friends and family

    • A diagnosis of MS can change relationships, especially if a friend or family member has to take on a role as a caregiver.
    • The physical consequences of MS can interfere with social activities.
    • Some of the symptoms of MS can impact on sexual relationships.
    • People with MS may require practical and emotional support but friends and family members may be unsure how to help.
    • Friends and family may find it difficult to cope with the uncertainty and changes that MS brings and may themselves need support.

Hugging on a bench

Practical guidance on managing MS

“REMEMBER THAT THIS IS YOUR JOURNEY, NOBODY ELSE'S, AND AS SUCH YOU'RE THE ONE IN CONTROL OF HOW YOU DEAL WITH IT.”

PATIENT

People with MS can take practical steps to improve their physical and mental wellbeing. This section outlines some of the strategies that can be helpful.

Staying positive

  • Being open with family and friends

    • Deciding how much to tell people is an individual choice – some people like to start with close family and friends and then take a step by step approach as needed.
    • If there are no outward signs that a person has MS, it can be even more important to let others know how they are feeling and to be clear about the type of support they need.
    • It is natural to have bad patches when it feels difficult to cope.
    • It is can be helpful to encourage family and friends to learn about MS so they can provide appropriate support.

  • Becoming informed

    “THERE'S PLENTY OF SUPPORT OUT THERE, IF YOU KNOW WHERE TO LOOK AND YOU'RE NOT AFRAID TO ASK FOR HELP. RECEIVING HELP AND SUPPORT CAN BE LIBERATING SO DON'T BE AFRAID TO ASK.”

    PATIENT

    • Some people with MS find it helpful to arm themselves with as much information as possible. This can help them to feel more in control and can often allay fears.
    • A wealth of information and support is available. Many patient associations offer excellent free resources such as booklets, videos, online publications and updates on new treatments.
    • Some people find it helpful to attend support group meetings or to join online forums. Communicating with other people in a similar situation can sometimes be very reassuring.
    • Some topics can be difficult to discuss with family and friends. If this is the case, it is sensible to ask to be referred to a counselor or call one of the patient association helplines to speak to someone who knows more about what you’re going through.

  • Making active choices

    • Learning about MS can help people living with the condition to become more involved in discussions about treatment options and to make informed decisions.
    • It is useful to prepare for medical appointments by noting down questions and keeping a diary of symptoms.
    • It is important to realize that MS may change some aspects of everyday life but it does not define a person. Setting realistic goals and focusing on what it still possible can make it easier to maintain a positive outlook.
    • Small changes in everyday activities such as household chores can make a real difference. Many support groups offer advice on this.
    • Planning occasional treats or pleasurable activities can be good for maintaining positive mental wellbeing in general.
    • Don’t be afraid to ask for and seek help if you feel you need it.

  • Learn from others' experiences

    “TALKING TO OTHERS WITH MS HAS MADE ME FEEL LESS SCARED ABOUT THE FUTURE. I'VE SEEN WHAT'S POSSIBLE EVEN IF MY DISEASE PROGRESSES.”

    PATIENT

    • Speaking with other patients that are doing well with MS can be a great way of learning how to manage your own condition. In this video, Trishna Bharadia, ‘expert’ patient and MS ambassador, discusses her experience of adjusting to life with MS.

Cooking

Taking care of health

People with MS can take positive steps to maintain their overall health and wellbeing.

Health Icon
  • Remaining aware

    • Infections or illness can sometimes trigger a relapse. It is important to seek treatment straight away.
    • New or worsening symptoms should be reported to a healthcare professional as they may be a sign of relapse.
    • People with MS should ensure that they understand the possible side effects of their medication so they can report any unusual symptoms.

  • Eating a healthy diet

    • Good nutrition is as important for people with MS as for everyone. It can help to improve energy levels and wellbeing.
    • Some patients can benefit from making specific dietary changes, for example, increasing fiber to help relieve constipation. The patient’s healthcare team can provide individual dietary advice.
    • A number of dietary approaches for MS have been put forward. These include very low fat diets and exclusion diets. The results have been variable and no specific conclusions have been reached. Patients should seek medical advice before making major changes to their diet.

  • Remaining active

    • It is widely accepted that keeping active is beneficial in most cases for people with MS. It is good for self-esteem, can help to maintain a healthy weight and may also help to combat fatigue.
    • People with MS may need to adapt the level of activity to suit their ability and should speak to their doctor before starting new forms of exercise.
    • Some support groups offer exercise DVDs or information sheets designed specifically for people with MS.

  • Managing fatigue

    • Fatigue is one of the most common symptoms of MS and it can have a major impact on quality of life.
    • A great deal can be done to manage both mental and physical fatigue. People with MS can learn techniques to pace themselves and to plan activities to save energy where possible.
    • In some cases medication may be offered.
    • Fatigue is an ‘invisible’ symptom and people with MS may need to explain to other people how they are feeling.
    • Some patient associations offer detailed information on ways to combat fatigue.
    • Exercise can sometimes help to relieve fatigue.

Practical considerations

  • Work and employment

    • MS often affects people during their working years and can have a major impact on career progression and productivity.
    • In most jobs, there is no legal requirement for a person to tell their employer they have MS unless it is likely to affect their performance, attendance or safety.
    • However, it can be helpful to do so as in most countries employers are legally obliged to make reasonable adjustments to the workplace or to working patterns.
    • Patient associations can often provide advice on employment issues for people with MS and employers.

  • Education

    • MS often affects people at an age when they are still studying.
    • Having MS may affect attendance at school, while memory or concentration problems could affect performance so it may be sensible to inform the course advisor. It may be possible to have extra time to complete assignments.

  • Benefits and social services

    • People with MS may be eligible for financial or social care support.
    • Nurses or local patient organizations may be able to provide information on this subject.

  • MS and pregnancy

    • MS is often diagnosed at an age when people are thinking of starting a family.
    • There is no evidence that MS has a direct effect on fertility and it does not usually affect labor or delivery. However, the risk of relapse increases in the months immediately after giving birth.
    • Some of the medicines used to treat MS are not proven to be safe during pregnancy so women should seek medical advice before trying for a baby.
    • There has been less research done about any potential impact of MS medication for men trying to father a child. It is worth speaking to a doctor if you have any concerns.

  • Informing relevant organisations

    • Once a patient has been diagnosed with MS, they may need to inform individual organizations such as driving agencies.
    • Patients may also need to inform insurance companies of their diagnosis.
    • The regulations vary from country to country and patient organizations can often advise on this area.

Joining a patient association

“I'VE MET SOME OF THE MOST INSPIRATIONAL, STRONG AND AMAZING PEOPLE THROUGH SPEAKING WITH OTHERS WHO HAVE MS. THEY'VE REALLY ENRICHED MY LIFE AND MADE ME MORE POSITIVE ABOUT THE FUTURE.”

PATIENT
  • There is a large number of patient associations that can provide detailed information and valuable support.
  • A list of the organizations around the world, searchable by continent and country can be found on the MS International Federation website at www.msif.org/living-with-ms/find-ms-support-near-you/