Multiple sclerosis. Great Ormond Street Hospital for Children NHS Foundation Trust: Information for young people. What is Multiple Sclerosis?

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1 Great Ormond Street Hospital for Children NHS Foundation Trust: Information for young people Multiple sclerosis When young people are told that they have a diagnosis of Multiple Sclerosis (MS) they usually have lots of questions. Some young people may have never heard of the condition and most will never have met anybody else who has this condition. It can be difficult to know where to look for information and how to find answers to their questions. We asked the young people who attend the MS clinic at Great Ormond Street Hospital (GOSH) what information they would have found most helpful when they were first diagnosed. This leaflet was written using their ideas. We are very grateful for their help and hope that this helps to answer some of the questions you may have. What is Multiple Sclerosis? Multiple sclerosis (MS for short) is a common neurological condition affecting approximately 100,000 adults in the UK, but it is very rare in childhood. Every year in the UK, around 125 children and young people will experience an initial episode of demyelination (when the fatty covering of the nerves is affected), but only about 25 of these will go on to have further relapses. MS is a life-long condition that can affect different areas in the brain, spinal cord and optic nerves (known together as the central nervous system or CNS). The word sclerosis comes from the Greek word for scarring or hardening. Simply put, the term multiple sclerosis means that there is more than one area of scarring affecting the nerves in the CNS. When a person has MS, the immune system, which normally is the body s defence mechanism to attack organisms such as bacteria and viruses, mistakenly attacks the body s own nervous tissue instead (this is called an autoimmune response). The main target of this attack is a fatty substance called myelin, which is a protective coating around the nerve cells in the CNS that helps the nerve to pass messages quickly. The immune attack damages the myelin and strips it off the nerve fibres (in a process called demyelination ), either partially or completely and as messages travel from the brain, they get stuck or slowed down causing some parts of the body to temporarily not be able to respond to what the brain is telling them to do. A relapse (also known as an attack, exacerbation or flare up) is a sudden worsening of an MS symptom or symptoms, or the appearance of a new symptom or symptoms, lasting at least 24 hours and separated from a previous relapse by at least one month. Relapses usually last from several days to several weeks, although they may extend into months. These further attacks leave behind scars (also known as lesions or plaques). These scars at multiple sites within the brain and/or spinal cord can also cause the ongoing symptoms associated with MS. neuron myelin sheath Sheet 1 of 6 Ref: 2015C0193 GOSH NHS Foundation Trust August 2015

2 What are the common symptoms of an MS relapse? Each person s symptoms will be different depending on where in the CNS the scarring occurs. There are many different MS symptoms. Not everyone with MS has the same ones. We usually only think of it being a relapse if the symptoms last more than one day. Tingles and strange feelings lasting only a few minutes are not signs of a new relapse. Possible symptoms of MS include: Physical Trouble seeing pain on movement of the eye, blurry vision or seeing two of everything (double vision) Losing balance and feeling a bit wobbly on your feet Weakness, tingling, or numbness in arms and legs Other symptoms that can be experienced with MS Psychological Difficulty with thinking and learning - such as finding it difficult to find the word you want to say, thinking quickly, or concentrating. Rapid changes in mood, suddenly bursting into tears, laughing or shouting angrily for no apparent reason. Many people feel a little sad, worried or frustrated at times. MS symptoms can come and go. Sometimes you don t even notice them. At other times they are more obvious. It is difficult for a person with MS to know from one day to the next how he or she will feel. That is why we say that MS is unpredictable. What are the types of MS in children and young people? We see different disease patterns in MS, known as: relapsing-remitting, primaryprogressive, secondary-progressive, and progressive-relapsing. MS nearly always starts as a relapsing-remitting condition in children. Relapsing-remitting means that the condition causes symptoms that occur for a short period (more than 24 hours) and then gradually improve over weeks to months. These symptoms come on over hours to days, and are caused by a new immune attack on the CNS. This attack is termed a relapse. On an MRI scan, they may be seen as a new area of demyelination. The period in between attacks is termed remission. The other forms of MS are rarely seen in children. Are there many people my age with MS? Multiple sclerosis is the most common disease of the CNS diagnosed in adults. An estimated 2,500,000 people in the world have MS. It is estimated that around 100,000 people live with MS in the UK. Most people with MS are diagnosed in their 20s or 30s, and it is rare in childhood. While exact figures are unknown, the MS Trust estimates that around 5 per cent of people with MS have their first symptoms in their teens or younger. How do you know I have MS? MS can be very tricky to diagnose. First, there is no one single test for MS. Second, most MS symptoms can also be caused by other conditions (the doctor may call these MS mimics, as they can mimic the symptoms), which means that the doctor cannot make a definite diagnosis of MS until other diseases and conditions are ruled out. Third, the doctor is unable to make the diagnosis until there is evidence of two different episodes of disease activity in either the brain or the spinal cord. To diagnose multiple sclerosis, the paediatric neurologist will take a detailed medical history and do a neurological examination and some tests. During your first appointment, the neurologist will spend some time asking you and your family lots of different questions about your medical history. The answers to these questions are important to help them to find out if you have had previous symptoms that might indicate an episode of demyelination had taken place in the brain and/or spinal cord. Sheet 2 of 6 Ref: 2015C0193 GOSH NHS Foundation Trust August 2015

3 The neurologist will also do lots of different things to assess your nervous system, such as: Tapping your knee with a rubber hammer - This is when the doctor taps your knee and your leg swings up and down without you doing anything. This tests how well your nerves are carrying messages in your body. Looking into your eyes Doctors know what healthy eyes are supposed to look like. The ophthalmoscope lets the doctor see the retina, which is the light sensitive bit of your eye that sends messages to the brain. Additionally, the doctor might have to use other tests to help them make the diagnosis, such as: Blood tests: while there is no definitive blood test for MS, blood tests can rule out other conditions that cause symptoms similar to those of MS. MRI scan: this uses a magnetic field to take pictures of your brain and spine. It will enable the doctor to see whether the myelin around the brain and spinal cord has been damaged. Sometimes a dye (contrast) will need to be given intravenously (into a vein using a needle) during the scan, to help see the areas involved more clearly. Lumbar puncture: this is when a tiny amount of cerebrospinal fluid (the fluid which surrounds the brain and spine) is taken from the bottom of your spine. This is to check for the presence of particular proteins that might indicate MS. The immune system produces antibodies to fight infection. In MS, antibodies attack the myelin surrounding nerves. As a result, the level of antibodies in the cerebrospinal fluid of someone with MS is higher than it should be. Analysis of cerebrospinal fluid is looking for: White blood cells: the number of white cells in the cerebrospinal fluid of people with multiple sclerosis can be higher than normal. If the count is very high, it might be due to an infection of some sort, and not MS. Oligoclonal bands: in MS, cells from the immune system attack the myelin that surrounds nerves. Because of this, the level of protein from the immune system of someone with MS is higher than it should be and is higher than the level in the blood. The test that looks for this is called electrophoresis. When doing this test, a sample of cerebrospinal fluid is placed on a gel and voltage is applied. This makes proteins that are the same size bunch together, forming visible bands. When bands are seen in the spinal fluid, which are not found in your blood, this indicates to us that there is increased immune activity in the brain. More than 80 per cent of people with MS have oligoclonal banding in their cerebrospinal fluid. Evoked potential tests: this is a method of measuring electrical activity in the brain and the eye in response to stimulation of specific sensory nerve pathways. They are able to detect the slowing of electrical conduction caused by damage (demyelination) along these pathways. A few small silver discs (electrodes) are attached to your scalp and face while a series of audio, visual or sensory tests are carried out. Information about many of these tests is available on our website at nhs.uk/teenagers/your-condition/tests-andtreatments. How did I get MS? Nobody knows exactly how MS is caused, but there is lots of research looking into it. Scientists think that your genes play a role in whether you might get MS or not. Your genes are inherited from your parents and they control lots of things, such as the colour of your eyes, whether you can roll your tongue or not and how tall you will be. Scientists think that having certain groups of genes may make a person more likely to develop MS. However, it is not just your genes that play a role and scientists are also looking into other things that might cause MS. It is thought that it might also be linked to certain types of viral infection, or even lack of exposure to sunlight as it is less common in countries that are nearer the equator. Sheet 3 of 6 Ref: 2015C0193 GOSH NHS Foundation Trust August 2015

4 What we do know however is that there was nothing you or your parents could have done to prevent MS. We also know that MS is not contagious like the flu. You didn t catch MS and will not give it to someone else. Is there a cure for MS? At the moment there is no cure for MS. MS is a chronic condition, which means that it is always there, even though the symptoms may come and go. Although there may be times when you might feel perfectly well, this doesn t mean that the MS has gone away. Scientists all over the world are working very hard to find better ways to treat and to hopefully one day cure MS. Treatments Although there is no cure for MS, there are different types of treatment that may help. While there are no medicines that can make MS go away completely, there are medicines that can help to make the symptoms feel better, to reduce the amount of relapses you might have, and to reduce the severity of symptoms when they do happen. Treatment for relapses If a person with MS has an attack, or relapse, they may be treated with steroids, usually given through a drip into a vein. For this, they may need to go into hospital for a few days. This will help to speed up the body s own recovery process. However, they will not change the long-term outcome for that attack. Disease modifying drugs These drugs are suitable for some young people with MS and are used to reduce the number and severity of relapses. Diseasemodifying drugs (DMDs) work by interacting with the immune system and calming the inflammation that is attacking the CNS. There are currently a number of DMDs used as first line treatments for relapsingremitting multiple sclerosis. The current licensed drug need to be injected on a regular basis - once a day, once a week or every few days. All the medications come with injection devices that make giving an injection much easier and the needle is almost always hidden. There are also new oral treatments becoming available, and these are now being trialled in children in the UK as they have been found to be safe and effective in adults. Speak to your doctor about the current trials available. In adult trials using all these treatments, the number of relapses decreased and the effect on relapses in young people with MS appears to be greater than seen in adults. Some research also suggests that the earlier treatment starts, the more effective it is likely to be. These drugs may not work for everyone, and the pros and cons of treatment need to be constantly reviewed. Vitamin D Evidence from studies on people with MS suggests that low vitamin D levels might be a risk factor for developing MS and also that low Vitamin D levels may increase the risk of a further relapse. Low Vitamin D levels are common in young people in the UK. Taking additional Vitamin D is now considered very helpful in MS. Your Vitamin D level will be checked on a regular basis. If your Vitamin D level is found to be low, we will ask your GP to prescribe Vitamin D, first to bring it to the recommended level, and then to take regularly. Other support Lifestyle changes and involvement of the whole team, including physiotherapists, occupational therapists and psychologists, are also important. This is to ensure that everyone with MS has the support and help they need, as well as to treat specific symptoms such as feelings of depression and fatigue or to help you cope better with injections. Sheet 4 of 6 Ref: 2015C0193 GOSH NHS Foundation Trust August 2015

5 Common Questions from Young People with MS Am I not going to see properly anymore? Most people who have an attack involving the eye (optic neuritis) make an excellent recovery. Unfortunately in some people, there can be a small amount of scarring left at the back of the eye which can affect vision. More information on optic neuritis is available at optic-neuritis. Am I going to die? This is a common worry for young people with Multiple Sclerosis. Most people with MS will live just as long as anybody else. People don t die from MS itself. Sometimes people who are very badly affected get more infections, or pick up other illnesses more easily than other people and it is this that shortens their life expectancy. Will I have to use a wheelchair? Most children who have MS will not have to use a wheelchair. If you do, you might not need to use it all the time. The aim of treatments will be to decrease the scarring, as we know that the scarring on your brain increases with each relapse. It is this scarring which can cause problems with moving and walking. Will I be able to go to school and play like usual? You will be able to go to your usual school and play like before. But sometimes you might feel tired, or a bit wobbly. You might miss some school sometimes if you have to go to doctors appointments or if you have a relapse. Your teacher will be able to help you catch up. Who will be involved in my care at GOSH? There may be many different people involved at GOSH and these may change over the years. This may seem confusing, but different members of the team can help young people with MS in different ways. Consultant Paediatric Neurologist These are doctors who have specialist knowledge of MS in children. They play an important role in diagnosing, treating and prescribing appropriate treatment. This is the person you will see each time you come to your appointment in the clinic. Clinical Nurse Specialist Your clinical nurse specialist works closely with the neurologists. They have an in-depth knowledge of the condition and are usually your main contact person in between appointments. Clinical Psychologists Clinical Psychologists can support children and their families in many aspects of MS care. Feelings of anger, anxiety, fear and sadness, for example, are common and understanding and managing these may be easier with the support of the Clinical Psychologist. The team can help with discussing various coping strategies for daily ups and downs and knowing which symptoms are common for young people who have MS. In addition, the team can support you with getting on with friends and family, planning for the future, techniques to cope with blood tests and other practical issues such as managing injectable therapies. Clinical Neuropsychologists We know that MS affects a person s CNS, and as a result there can sometimes be effects on a person s ability to concentrate, on their memory and on their learning. Neuropsychological testing will help identify specific strengths and weaknesses that you may be experiencing. The Clinical Neuropsychologist can use the results of the testing to make recommendations to help you at school. Even if there are no problems, it is very helpful for us to establish a baseline and re-evaluate progress every few years. Sheet 5 of 6 Ref: 2015C0193 GOSH NHS Foundation Trust August 2015

6 Advice from other young people with MS Be happy, live life to the fullest, enjoy what you are doing NOW, make sure to have a lot of rest and motivation. Don t read dodgy websites Further support The MS Society supports people affected by multiple sclerosis and other demyelinating disorders. Call their helpline on or visit their website. A website for young people is also available. Never lose hope and show people that MS doesn t influence your personality Keep strong and be proud of yourself as you have gone through or are going through something that no-one else would want to go through. Do your physiotherapy and keep yourself checked up regularly Do not let MS stop or limit you from doing whatever you wish Compiled by the Neuroimmunology Centre with help from our children and young people with MS in collaboration with the Child and Family Information Group Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London WC1N 3JH Sheet 6 of 6 Ref: 2015C0193 GOSH NHS Foundation Trust August 2015