Treating symptoms. An introduction to. Everyone diagnosed with MS can get treatment for their symptoms. The symptoms of MS. Who can get treatment?

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1 Everyone diagnosed with MS can get treatment for their symptoms This resource is an introduction to the treatments that are available. The symbol will point you to further resources. An introduction to Treating symptoms The symptoms of MS 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. Some of the most common symptoms are fatigue (a kind of exhaustion which is out of all proportion to the task that has been undertaken), stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking or problems with eyesight. Learning to manage your symptoms takes time. You can t be an instant expert but it can help to read up about your treatment options ready to talk them through with your health professionals. Not all symptoms are obvious to other people. For example, fatigue is very real to the person who is experiencing it but can seem invisible to others. Problems with eyesight can make everyday tasks a bit tricky but those around you may not notice. Sometimes you may be glad that no one notices but at other times it may be frustrating. About MS Who can get treatment? Some people have the impression that there are no treatments for people with primary or secondary progressive MS. This is not true. Treatments are available for the symptoms of MS no matter what type of MS you have. If you are experiencing symptoms, you should talk about the options for treatment with your health professionals. What happens after diagnosis? Making the most of appointments Relapsing remitting MS: an introduction Primary progressive MS: an introduction Secondary progressive MS: an introduction What kinds of treatment are available? Treatments for people with MS can be divided into two broad types:

2 Some people have the impression that there are no treatments for people with primary or secondary progressive MS. This is not true. Disease modifying treatments Disease modifying treatments (known as DMTs or DMDs) can reduce the number and impact of relapses but these are only appropriate for people who are having relapses. Relapsing remitting MS: an introduction Disease modifying treatments: an introduction Symptomatic treatments Treatments for the symptoms of MS include: - Drug treatments. - Therapies, such as physiotherapy or cognitive behavioural therapy. - Symptom management techniques, for example pacing yourself to minimise fatigue. - Rehabilitation which involves helping someone to achieve their personal goals. Only symptomatic treatments will be discussed here. There is a wide range of possible treatments so we will point you to the relevant resources for more detailed information. You may prefer to focus on information about the symptoms that are troubling you now. It can be a bit overwhelming to read about all the possible symptoms of MS. It s important to know that not everyone experiences all of them so you might like to leave aside information that is not relevant to you. Complementary and alternative medicines Some people consider using complementary and alternative medicine. This is a personal choice but it is important to look at the likely risks and the costs, as well as the possible benefits. There has been very little research into this area so there is not much clear-cut evidence one way or the other. However, many people report that approaches like yoga, Pilates, meditation and mindfulness improve overall physical and mental wellbeing. If you are considering a complementary or alternative medicine, it would be best to discuss it with your health professionals. Some alternative medicines can interact with other medicines so you should always inform your health professionals if you take anything. Can you explain the naming of drugs? Drugs often have more than one name which can be rather confusing. Each drug will have a generic name, which is the official medical name for the active ingredient in the medicine, but it will also have a brand name, which is the trade name given by the manufacturer. There may be more than one brand name if the same, or very similar, medicines are produced by more than one manufacturer. Brand names always begin with a capital letter but generic names do not. An example is the treatment for neuropathic pain called gabapentin, which has the brand name Neurontin. Part of the Making Sense of MS series from the MS Trust

3 Many people find that approaches like yoga, Pilates, meditation and mindfulness improve overall physical and mental wellbeing. Do I have to pay prescription charges? In England, people with MS have to pay the usual prescription charges for any medication, unless they are over 60 years of age or qualify for free prescriptions for some other reason. Anyone can buy a prepayment certificate which will cover all their prescription charges for the next three months or for one year. This is often cheaper. In Scotland, Wales and Northern Ireland, there are no prescription charges. Where can I get more information about treatment options? The following resources explain the treatment options for the symptoms that are most common in people who are newly diagnosed with MS. You will find additional sources of information on the treatment of other symptoms in our publications list or in the online A to Z of MS. Publications for people with MS from the MS Trust Bladder: managing your bladder Bowel: managing your bowels Cognition factsheet Depression factsheet Living with fatigue Pain factsheet A to Z of MS: StayingSmart (for cognitive symptoms): org.uk When should I seek treatment? It can be difficult to know when to seek treatment and when to sit things out. There are a few things you can look out for which may explain why your symptoms are worse at the moment: - Do you have an infection such as a cold, flu or a bladder infection? If so, this can cause a flare up of symptoms. Symptoms will improve as you recover from the infection so you should look after yourself in the usual way for a cold or flu, or visit your GP or MS nurse to see if you need antibiotics for a bladder infection. - Are you too hot? Hot weather makes many people s symptoms worse and the same can happen if the central heating is too high. Do what you can to get cool and symptoms should improve. - Are you too cold? Some people find that being too cold makes their symptoms flare up although this is not as common as being too hot. - Are you feeling stressed? Stress can make any symptoms harder to live with and, for this reason, it is a good idea to manage stress as much as possible.

4 Hot weather makes many people s symptoms worse and the same can happen if the central heating is too high. We can offer some suggestions about when to seek support from a health professional: - If you have new symptoms or your symptoms are suddenly much worse, for example if you are having serious difficulty walking, and none of the above applies then it is probably worth contacting your MS nurse straight away especially if you have experienced relapses. If you are not sure, you can wait a few days to see if symptoms improve. It can be worrying when symptoms flare up but try not to panic. - Sometimes, symptoms worsen gradually so, after a number of months or years, this adds up to a big change. In this situation, don t ignore symptoms for too long but ask your MS nurse for advice. You should have your MS reviewed every so often but, if this isn t happening or your appointment is a long way off, you can ask for a review. - New symptoms may not be due to MS so speak to your GP or MS nurse if you are concerned and make sure you have all the usual health screens, such as for diabetes, high blood pressure and cancer. Most medications are not recommended during pregnancy so if you are planning to become pregnant, or think you might be already, you should discuss this with your MS nurse or doctor. It would be a good idea to check with your MS nurse in advance so that you know who you should contact, and how to contact them, if you are concerned about symptoms. Making the most of appointments MS and your feelings Pregnancy and parenthood factsheet How to keep cool: Who will support me? You can discuss options for the treatment of any troublesome symptoms with your health professionals. This may be your neurologist, your MS nurse or someone who specialises in a particular therapy or in the management of a particular symptom. Your MS nurse, neurologist or GP can refer you appropriately. Health professionals should be happy to work in partnership with you so that you can select the best treatment option. You will be in charge of managing many aspects of your MS, like taking medication as prescribed or undertaking exercise as suggested by a physiotherapist. Family and friends will want to support you but, occasionally, it may feel like they are pushing you to adopt a particular treatment. If you are over 18, it is your decision how to manage your MS, although it s good to listen to the views of those around you. What happens after diagnosis? Making the most of appointments Sources of information and support

5 It may be hard to remember, or a bit of a nuisance, but sticking to the treatment plan should give it the best chance of working well. What if treatment is not working? First of all, you may need to give a new treatment time to work, as the effect may not kick in straight away. Your health professional may have said how long this might take perhaps several weeks but, for some treatments, it may take a few months. They may have scheduled an appointment to review how you are getting on after an appropriate time. Secondly, are you doing exactly what was suggested? Do you take your pills or perform your exercises on the right number of days a week, the right number of times a day and at the right times, including following any instructions about taking pills before or after meals, early or later in the day? If you are not sure, you can take a look at the label on your pack of pills and the leaflet inside or at the instruction sheets from a therapist. If in doubt, ask your health professional or a pharmacist. It may be hard to remember, or a bit of a nuisance, but sticking to the treatment plan should give it the best chance of working well. For some medicines, the dose has to be increased gradually until the right level is found. In this case, you may be started on a low dose then either given instructions on when to increase the dose, or invited to a review before any decision is made about whether to increase the medication. Lastly, if the treatment is still not working, it is worth asking if there is something else that you can try. Not all treatments work for everyone and it can be a case of trying several to find out which one works best for you or whether a combination of several drugs is the best option. A word of warning Watch out for anyone, including on the internet or in the press, who claims that they can cure MS. At the moment, there is no cure. Also, be careful of people selling supplements and don t buy anything that doesn t come from a trusted supplier. The alternative treatments market is poorly regulated and going abroad for treatment can be risky, as well as costly. The most important thing is to use reliable sources of information such as the MS Trust. Other sources may sound very convincing, but may just be opinion, marketing hype or someone s personal experience, presented as facts that will apply to everyone. If you find a topic of interest, do further research on the websites of the main MS charities. If there s been a breakthrough, they will be reporting it too. If they ve not reported it, or have a different take on the research, then consider what is being said. Look to see if the research is at an early stage as it may be a while before it comes to the clinic and may not get there at all.

6 Don t feel that you have to put up with all your symptoms and that this is an inevitable part of having MS. Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET T T E. info@mstrust.org.uk Registered charity no It can be tempting to try an experimental or controversial treatment but the risks of harm, significant side effects and high costs should be considered. Try not to be pressured into something by well-meaning friends or family. If in doubt, have a chat with your MS nurse or GP. These questions can help you find out if there is any good evidence behind the claims: - Have the results been independently researched and repeated by another group of scientists? - Has the study been published in a scientific journal? - What do other experts in the field say? - Has there been a clinical trial? - Is the treatment licensed? What exactly is it licensed for? Research and MS Are there new treatments on the horizon? MS is a very active area of research and new treatments are coming through all the time. Don t feel that you have to put up with all your symptoms and that this is an inevitable part of having MS. Keep asking if there are any treatments including any new ones since your last appointment. You can keep up to date with new treatments in MS through our newsletter, Open Door, or our website. Publications for people with MS from the MS Trust (Open Door) Research and MS Open Door newsletter: Research: 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 Treating symptoms 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 Treating symptoms k