This eBook has been developed by Actelion Pharmaceuticals Ltd as a resource to improve understanding of MS. It provides a useful summary of current information about the disease, the diagnosis procedure and available treatments. It highlights the impact MS can have on the life of a person diagnosed with MS, and those around them, and also outlines the strategies people with MS can use to manage their condition more effectively.
The book is intended for the use of a general audience.
“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.”
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 are 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.
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.
MS is the greatest non-traumatic cause of disability in young adults.
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.”
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.”
MS is generally characterized by periods of relapse (episodes of new or worse symptoms) and recovery (also called remission), when symptoms improve or disappear completely. The disease often 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.
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.
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.”
MS causes damage to neurons and neuronal insulation (myelin) in the brain and/or spinal cord. Since these neurons 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.
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 100,000 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.”
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.
MS is a disease in which the body’s immune system mistakenly attacks the cells of the brain, spinal cord, and optic nerves (the central nervous system). The term Multiple Sclerosis, meaning “many scars,” describes the lesions, or plaques, that form throughout the central nervous system in MS patients. Research has shown that a defining feature of the plaques is “demyelination.” Demyelination means the loss or removal of the insulation (myelin) that surrounds neurons. Healthy myelin allows for conduction of electrical signals along neurons; damage to myelin impairs electrical conduction and leads to disability in MS.
The nervous system is the body’s communication highway. It controls every function in the body.
It has two elements: the CNS and the peripheral nervous system (PNS).
The CNS, which consists of the brain and spinal cord, is enclosed within the skull and the spine. The PNS comprises all other nerves.
The CNS receives and processes messages from the peripheral nervous system and sends out instructions on how the body should respond.
Messages are sent via nerve cells (called neurons) that are coated in a protective shield called myelin
How does MS affect the CNS?
In people with MS, the CNS becomes damaged and is unable to work efficiently.
It is thought that the immune system mistakenly identifies myelin as an unwanted ‘invader’ and attacks it.
The healthy tissue is eroded and gets replaced with patches of scar tissue, called ‘plaques’ or ‘lesions’, which causes disruption to the transmission of messages along the nerve cell.
This damage can occur anywhere in the CNS and the symptoms experienced will depend on the areas of the brain and spinal cord that have been affected. This explains why MS can cause a wide range of symptoms.
In some cases, the body is able to repair the damage to the myelin, or finds ways of re-routing messages via an alternative pathway. This explains why the symptoms of MS can often improve or come and go.
MS is difficult to diagnose in the early stages due to the many different symptoms patients present with. Which type of MS a patient has can also only be determined after some time when the course of the disease becomes clear.
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).
Patients may have one or more of the following tests:
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.
Small electrodes are attached to the body to measure the speed of messages along the nerves.
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.
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.
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.”
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.
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.
“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.”
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.
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.
“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.”
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.
Taking care of health
People with MS can take positive steps to maintain their overall health and wellbeing.
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.
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.
If you would like to understand more about any medical terms included in this eBook, one of the US patient associations has created a comprehensive glossary of specific expressions you may come across when learning about MS.
This resource has been developed by Actelion Pharmaceuticals in order to provide an environment to deliver a better understanding of multiple sclerosis (MS) and to pool information regarding the disease, the diagnosis procedure, available treatments and the impact it could have on the life of someone diagnosed with MS. The resource is for use by a general audience.
The information in this resource is not intended as a substitute for advice/treatment by a physician, whose instructions should always be followed. Neither does the information provided constitute an alternative to advice from a doctor or a pharmacist and should not be used on its own to produce a diagnosis or to commence or cease a particular treatment.
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