Relapses Matter A GUIDE TO REPORTING MULTIPLE SCLEROSIS SYMPTOMS

Transcription

1 Relapses Matter A GUIDE TO REPORTING MULTIPLE SCLEROSIS SYMPTOMS

2 Scientific Review by: COLLEEN HARRIS, MN, NP, MSCN Nurse Practitioner/Coordinator University of Calgary MS Program Calgary, Alberta The publishers would like to thank the following MS nurses for their invaluable contribution: Bonnie Blain, Red Deer, Alberta; Janet Brown, St. John s, Newfoundland; Kathleen Carr, Toronto, Ontario; Sheryl Clarke, Toronto, Ontario; Peggy Cook, Saint John, New Brunswick; Isabelle Jalbert, Charny, Québec; Anna Kazimirchik, Burnaby, B.C.; Constance Lamothe, Thunder Bay, Ontario; Diane Lowden, Montréal, Québec; Lynn McEwan, London, Ontario; Michelle Milot, Greenfield Park, Québec; Melinda Nickerson, Halifax, Nova Scotia; Krista O Brien, Ottawa, Ontario; Josée Poirier, Montréal, Québec; and Josée Vigneault, Trois-Rivières, Québec IMPORTANT - PLEASE READ Information provided in this booklet is for educational purposes only. It is not intended to replace the advice or guidance of a professional health care practitioner or as a substitute for medical care. Contact a qualified health care practitioner if you have any questions concerning your care.

3 Relapses Matter A GUIDE TO REPORTING MULTIPLE SCLEROSIS SYMPTOMS Introduction Multiple sclerosis (MS) is an autoimmune disorder that affects the central nervous system (CNS). This includes the brain, spinal cord and the optic nerve. While the precise causes of MS are unknown, it s believed that genetic and environmental factors interact to cause the immune system to become switched on in an abnormal way. Immune cells then invade the CNS and produce swelling and inflammation. An important role of the immune system is to attack foreign invaders (e.g. bacteria and viruses) that cause disease. But in MS the target of the attack is myelin, the insulating sheath that protects nerve fibres in the CNS. As the immune system flares up, inflammation damages myelin, in effect causing short circuits that interrupt the signals passing along the nerves. These interruptions in nerve signalling are experienced as MS symptoms, such as tingling or numbness, muscle weakness, vision problems, difficulties with balance or walking, or nerve pain. When you experience new MS symptoms - a relapse - it may be a sign that your immune system is flaring up and causing inflammation and damage in the CNS. Relapses are a window into your MS. They provide your doctor and MS nurse with vital clues about how active your MS is and how you may be affected in the future. For people who aren t taking an MS medication, relapses may be a sign that it s time to start. If you re already on treatment, ongoing relapses may indicate that your current medication isn t doing its job. Although relapses are very real, a doctor or nurse can t always see your symptoms on a clinical exam. They must rely on you to tell them about any relapses you re having. This booklet has been developed to help you keep a written account of your MS relapses that you can share with your doctors and MS nurse. With this information in hand, they can work with you to develop a plan to relieve your symptoms and better manage your MS. 1

4 What is a relapse? A new onset of neurological symptoms, or a worsening of symptoms you already have, is called an MS relapse. Having sudden, unexpected symptoms can be very upsetting but these relapses are the body s way of warning you that there s something wrong. Most people with MS are diagnosed during the relapsingremitting MS (RRMS) phase. This term describes what happens during the initial part of the disease course. The immune system flares up periodically and causes relapses, and the symptoms get better (i.e. go into remission) once the inflammation subsides. Unfortunately, during the periods in between relapses, the MS disease process itself does not go away. There may still be ongoing inflammation in the brain, which your doctor can detect on an MRI (Magnetic Resonance Imaging) scan. This inflammation often doesn t cause any symptoms, but it is still there nonetheless. You will only experience relapse symptoms if the inflammation happens in a sensitive area, or if it becomes extensive enough in the brain or spinal cord. So a relapse is an important sign that your MS is active and needs to be settled down. 2

5 How do I know if I m having a relapse? During your daily life, you may notice that your MS symptoms are a little bit better or a little bit worse. This ebb and flow of symptoms can make it more difficult to recognize when you are having an actual relapse. A relapse is when your MS symptoms become worse, or you have a new symptom that you haven t experienced before. This sense of feeling worse can happen fairly quickly, and the symptoms must persist for a day or two for them to be considered a relapse. Since the effects of a relapse can drag on for a month or more, worsening symptoms within a month of a relapse may be the old relapse rather than a new one. But it s still a good idea to contact your MS team to tell them about persistent problems you re having. Some common symptoms of a relapse are listed in Table 1 (see p.5). There will be times when you feel worse because of situations that aren t related to a flare-up. For example, coming down with an infection (e.g. the flu, a bladder infection, etc.) can make your MS symptoms worse. Getting overheated - from strenuous exercise, a hot bath, or sitting in the sun on a hot day - can also cause problems. In these situations, what you re feeling is not a true relapse. When you recover from your infection or as your body temperature cools down, your MS symptoms will improve. 3

6 The best way to tell if your new or worsening symptoms are a relapse is to wait a bit. If you re still experiencing problems after 24 to 48 hours, it s usually best to contact your MS clinic. However, there s no need to wait to call your doctor if your new symptoms are severe or troubling, such as if you lose vision in one eye, have difficulty walking, or your hand is so numb that you can t use it. In these situations, it s better to call your doctor sooner rather than later. ARE YOU HAVING A RELAPSE? A relapse is: A worsening of your MS symptoms or new MS symptoms that persist for at least a day or two. A relapse is not: MS symptoms that worsen during an infection (e.g. a cold, the flu, bladder infection, etc.) MS symptoms that worsen when you are overheated (e.g. from strenuous exercise, a hot bath or sitting in the sun) MS symptoms that worsen within 1 month of your last relapse - these symptoms are probably caused by the old relapse, not a new one. But any worsening symptoms should be reported to your MS team. 4

7 Why relapses matter Each relapse is an attack on your nervous system. In the first few years of living with MS, your body is able to repair much of the damage that s done. Unfortunately, as the years pass and you have more and more relapses, your body is less able to heal itself and the nerve damage starts to accumulate. This permanent nerve damage means that MS symptoms won t go away entirely after a relapse. One or more of your MS symptoms - muscle weakness, vision problem, difficulty with bladder control, or other symptom - may become the new normal in your daily life. It s very important to try to reduce the inflammatory activity of your MS and prevent permanent nerve damage. This is why taking a medication to treat your MS is so important. Since the underlying problem is a disordered immune response, all MS therapies work by targeting the immune system. Inflammation is most significant in the first few years after you re diagnosed, which means that there s a limited time window in which to find the most effective treatment to control your MS. TABLE 1. Relapse symptoms can include: Vision problems (blurriness, double vision, jumpy vision) and/or eye pain Numbness or tingling Nerve pain Dizziness Problems with balance or coordination Difficulty walking Muscle weakness, stiffness, tremors or spasms Bowel or bladder problems Difficulty with thinking or verbalizing your thoughts 5

8 Talking to your neurologist and MS nurse Everyone s MS is unique, so there may be some trial and error until the right therapy is found to suit your needs. But you have an important role to play in this process. First of all, you ll need to make sure that you re taking your medication as prescribed by your doctor. Then if you re still having relapses - especially if they are frequent or severe - it can be a sign that your treatment may not be doing its job. If your relapse is severe or disabling, your doctor may prescribe a course of steroids to reduce the severity of the attack and to shorten the duration of your symptoms. You and your doctor can then review your situation to determine if there are any problems taking your medication or if things would be better with another treatment. By providing your MS team with accurate, up-to-date information about your relapses, you re helping them to determine if your medication is working to control your MS. 6

9 How do I report my relapses? With this booklet we ve provided you with some forms so you can report any relapses that occur. Complete one sheet for each relapse within a day or two of having one - while the details are fresh in your mind. It s important to provide as much information as possible so your MS team has a more complete picture of how you re doing. Talk to your doctor or nurse about how and when to communicate this information. Contact your MS clinic or neurologist once you ve finished recording the details about your relapse. Your doctor or nurse will enter the details in your file and may book an appointment to see you. Bring any completed sheets with you when you visit your neurologist and MS nurse. It s important to provide your MS team with regular updates about any relapses you re having. MS disease activity needs to be controlled before repeated relapses cause more permanent damage. So it s best to contact your MS team when you suspect a relapse rather than wait several months until your next appointment. Your doctor and MS nurse are counting on you to provide timely and accurate information about your relapses. As you work with your MS team, your Relapse Reports will be the cornerstone of the plan you develop together for managing your MS. 7

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11 Relapses Matter! Sponsored by Novartis Pharmaceuticals Canada Inc. 385, boul. Bouchard Dorval, Quebec H9S 1A9 CANADA NPR/GIL/0013(1)E