About MS. An introduction to. An introduction to multiple sclerosis for people who have recently been diagnosed. What is MS? Is it common?

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1 An introduction to multiple sclerosis for people who have recently been diagnosed When you have just been diagnosed with multiple sclerosis, you will probably have many questions about the condition and what it could mean for you. This introductory information should answer the most common questions about MS. The symbol will point you to further resources. What is MS? MS stands for multiple sclerosis which is a neurological condition that affects the brain and spinal cord (the central nervous system). Sclerosis means scarring or hardening of tiny patches of tissue. Multiple is added because this can happen at more than one place in the brain and spinal cord. MS is a lifelong condition. It is not fatal and most people with MS live about as long as everyone else. It is not infectious or contagious so it can t be passed on to other people like some viruses and bacteria. An introduction to About MS Is it common? MS is more common than many people imagine. Over 100,000 people in the UK have MS which is about one in every 600. Every week nearly 100 more people are diagnosed with MS and it is nearly three times more common in women than in men. Most people are diagnosed in their 20s and 30s but it can be diagnosed in younger and older people. What are the symptoms? There is a wide range of possible symptoms but most people experience only a small number around the time of diagnosis and won t go on to experience them all. They vary from one person to another and from day to day. This makes MS rather unpredictable and can take some getting used to. Some of the most common symptoms around the time of diagnosis are fatigue (a kind of exhaustion which is out of all proportion to the task undertaken), stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking or problems with eyesight.

2 There is a wide range of possible symptoms. Most people experience only a small number around the time of diagnosis and won t go on to experience them all. Many of these symptoms are invisible to other people. This can be upsetting if you are feeling very unwell but seem OK to others. You may need to explain that your MS is causing difficulties, rather than assuming that others can see this. If you experience new symptoms, it is important to get them checked out by your MS nurse or GP. They may be part of your MS or they may have some other cause. Like everyone else, it s good to go for all the routine health tests such as for blood pressure, diabetes and cancer screening. At the moment, there is no cure for MS but there is a wide range of possible treatments which you can discuss with your health professionals. Making the most of appointments Treating symptoms What happens in the body to cause symptoms? Although MS is a neurological condition, some of the symptoms may seem like nothing to do with your nerves. For example, you might think that difficulties with eyesight would be due to a problem in the eye itself. However, sight problems in MS are because the condition has affected either the nerves from the eye to the brain (the optic nerves) or a part of the brain which controls or interprets vision. MS is thought to be, at least in part, an autoimmune condition which means that the immune system is mistakenly attacking components of the body instead of just attacking invaders like viruses and bacteria. In MS, the attack is on a protein called myelin which forms the insulating covering around nerves. The resulting tiny patches of damage (sclerosis) mean that messages don t get passed along the nerve very efficiently or, sometimes, they don t get through at all. The symptoms that someone experiences correspond to the areas of the brain and spinal cord that have been damaged. The path to diagnosis MS can be very difficult to diagnose and it can take a long time to get a definite diagnosis. All the symptoms of MS can also be symptoms of other conditions so the doctors have to work out which of all the possibilities is the correct one. This can mean many tests to rule out other conditions and then more tests to see if it might be MS. It is sometimes a question of watching and waiting to see how symptoms develop as this can help distinguish MS from the other possibilities. All this can be very frustrating and worrying but it is quite a common experience. Part of the Making Sense of MS series from the MS Trust

3 Although MS is a neurological condition, some of the symptoms may seem like nothing to do with your nerves. Sometimes people have experienced unusual symptoms over many years but the symptoms might have gone away, largely or completely, and seemed unimportant. Sometimes, there seem to be other, very reasonable explanations. For example, being incredibly tired could be due to a new baby in the family. Stumbling more could be due to getting older or wearing in a new pair of shoes. In the end, these episodes may add up to a worrying collection of oddities so someone will seek a medical opinion. This may prompt investigations but it may not be possible to correctly diagnose the cause. Consequently, some people end up with another diagnosis which later turns out to be wrong. Some people will be told that the cause of their symptoms can t be found. This can be hard to accept and it may be years before the correct diagnosis of MS can be given. It can be tempting to blame yourself, or your health professionals, for not getting to a diagnosis of MS much sooner. However, it is often a tricky call to make so usually no one, including you, will be to blame. For some people, there will be a sudden, more severe attack which demands hospital attention and a diagnosis of MS may follow very quickly, perhaps within days. Tests used in the diagnosis of MS There is no simple test for MS which will say yes or no like a pregnancy test. Neurologists have to take a multi-pronged approach and use their experience to decide if it is MS or not. Sometimes, it is still impossible to be absolutely certain. Neurologists will usually ask about any history of unexplained symptoms and may ask for tests to rule out other conditions. The most common next step is to have a scan of the brain and/or spinal cord using MRI (magnetic resonance imaging). This scan can detect the tiny scars caused by MS which show up as little white patches and are usually called lesions. Everyone gets more white patches in their brain as they get older so the neurologist has to judge if they are all age-related or possibly due to MS. Sometimes a dye called gadolinium is injected into a vein before the scan as it can help the radiologist and neurologist distinguish between active MS lesions and old areas of scarring. Some people will have a lumbar puncture, sometimes known as a spinal tap. In this test, they take a small amount of the fluid which bathes the brain and spinal cord. This can be analysed in the laboratory and if more protein bands are seen than usual (called oligoclonal bands) this can suggest MS.

4 An MRI scan can detect the tiny scars caused by MS which show up as little white patches and are usually called lesions. In some cases, evoked potential tests are carried out. This involves putting small electrodes on the head, arms or legs to measure the speed of messages travelling along the nerves from the eyes, ears or skin on the limbs. If the messages are slowed then this may be due to MS. The neurologist will review the test results alongside your medical history to decide if it adds up to a diagnosis of MS. Is everyone s MS the same? No, everyone s MS is different. Depending on the pattern of symptoms, MS can be divided into three main types although it s not an exact science so sometimes there s some doubt, especially to begin with. In all types, it s impossible to predict how MS will develop over time. Your neurologist may have told you which type of MS you have. If you don t know your type of MS, you could make a note to ask your neurologist or MS nurse at your next appointment although they may not know yet. What happens after diagnosis? Making the most of appointments Relapsing remitting MS (RRMS) The majority of people are diagnosed with relapsing remitting MS. Relapses are new or much worse symptoms, lasting anything from one day to a number of weeks. Some relapses are relatively mild but some have a greater effect. Symptoms usually improve and sometimes go away completely as the body repairs itself. Relapses may be treated with steroids in the first few days to speed up recovery. Every relapse is different and it isn t possible to predict when relapses will happen or how often. This is one reason that MS is often described as unpredictable. If you have relapses, talk to your neurologist or MS nurse about disease modifying treatments (DMTs). These can decrease the number and impact of relapses. Relapsing remitting MS: an introduction Disease modifying treatments: an introduction Primary progressive MS (PPMS) About one in eight people are diagnosed with primary progressive MS. In this type, there are no relapses, except incredibly rarely, but symptoms and disability increase from the beginning, although there can be periods of improvement or stability. Primary progressive MS: an introduction

5 Everyone s MS is different. In all types, it s impossible to predict how MS will develop over time. Secondary progressive MS (SPMS) Some people diagnosed with relapsing remitting MS will later convert to secondary progressive MS. However, a very small number of people will be diagnosed with secondary progressive MS from the outset. In hindsight, they may have experienced relapses in the past but these may have been mild or their significance was missed. Alternatively, there may have been lesions in the brain or spine but they were located in areas that did not lead to any symptoms. In secondary progressive MS, relapses are missing or infrequent. Disability increases although the rate at which this happens varies from one person to another and there may be periods of improvement or stability. Secondary progressive MS: an introduction Why me? People often wonder whether they did something wrong or if they could have stopped MS from happening to them. The answer to this is no as the causes of MS are not well understood so no one could have advised you how to prevent your MS. The cause of MS is a very active area of research and it seems likely that a number of different factors have to come together to trigger MS. Some of these factors are in the world around us and there is increasing evidence that lack of sunshine and vitamin D play a part. Other possibilities include being exposed to certain common viruses and carrying certain genes. However, no one knows for certain. Will my family get MS? MS is not considered an inherited condition as it is not passed on in a predictable way like some conditions, such as haemophilia or muscular dystrophy, and most people have no previous family history of MS. Some genes make it more likely that someone gets MS but having these genes is definitely not enough on its own as other factors are needed to trigger MS. This means that the risk of another family member getting MS is still quite small.

6 People often wonder whether they did something wrong or if they could have stopped MS from happening to them. The answer to this is no. Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET T T E. Registered charity no How much will MS affect me? After diagnosis, it is natural to wonder what MS might mean for your future. Although MS is a lifelong condition, people with MS can expect to live about as long as everyone else. It is rare for people to die directly from MS but those who are more severely affected tend to get more infections than healthier people and this can cause complications and decrease life expectancy. This means that it is important to keep as well as possible and get any infections, like urinary tract (bladder) infections, treated promptly. If you already know someone with MS, you may be tempted to assume that your MS will be the same as theirs. This is very unlikely as everyone s MS is different. This is true even if you are closely related to the person. Also, the treatment and care of people with MS has been improving over the years so people diagnosed with MS today can expect a better quality of life than was possible previously. Often, the general public s idea of MS is someone with significant walking difficulties or in a wheelchair. Although MS can cause some disability, most people never need to use a wheelchair on a regular basis. Many people with MS show no obvious signs of their condition. Consequently, most people would not realise that someone had MS if they met them socially, at work or elsewhere. You may already know someone with MS without realising. MS affects everyone differently so it is not possible to predict exactly how your MS will develop. It is natural to wonder about the future but being diagnosed with MS may not change your plans so don t feel pressured into making life changing decisions too soon after diagnosis. Living well with MS Sources of information and support Publications for people with MS from the MS Trust Relapsing remitting MS: an introduction Primary progressive MS: an introduction Secondary progressive MS: an introduction MS and life choices Making Sense of MS This information is part of a set of resources for people who are newly diagnosed with MS. You might like to look at our introductory resource, Making Sense of MS, which answers the questions most commonly asked around the time of diagnosis. Jane Havercroft About MS 2014 Multiple Sclerosis Trust This edition published 2014 This publication will be reviewed in three years. All rights reserved. No part of this book may be produced, stored in a retrieval system or transmitted in any form by any means, electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise without written permission of the publisher. Produced by VerdiCotts Design About MS K