National Hospital for Neurology and Neurosurgery. Multiple Sclerosis Relapse Clinic. Information on recovery following a relapse

Transcription

1 National Hospital for Neurology and Neurosurgery Multiple Sclerosis Relapse Clinic Information on recovery following a relapse

2 2 If you would like this document in another language or format, or require the services of an interpreter, contact us on We will do our best to meet your needs. Contents 1. Introduction 2. About the MS relapse clinic 3. Rest 4. Exercise 5. Driving 6. Services at NHNN 7. What to do if you think you are having a relapse in future 8. Useful contact details 9. Sources of further information 10. How to find us

3 3 1 Introduction This booklet has been written by the Multiple Sclerosis (MS) team at the National Hospital for Neurology and Neurosurgery (NHNN). The aim of the booklet is to provide information on managing MS relapses. It has been created for patients (or their family or carers) under the care of the Multiple Sclerosis team at this hospital. It is not intended to replace discussion with your consultant, MS nursing team or other healthcare professionals. If you have any questions do not hesitate to contact a member of the team and they will be happy to answer them for you. 2 About the MS relapse clinic You have come to the relapse clinic because you or the MS team suspect that you are having a relapse. At the clinic the neurologist will determine whether you are having a relapse. Relapses are defined as new MS symptoms, or an aggravation of old MS symptoms that have lasted longer than a day, without the presence of infection. Determining whether someone is having a relapse is often not clear cut. If you are having a relapse it is likely that the symptoms will come on gradually sometimes over 24 hours and will then remain for days and sometimes weeks before gradually subsiding. Relapses often resolve completely but can leave some residual symptoms you are experiencing will subside over time. This can take weeks or months. This leaflet will give you helpful information on managing during your relapse.

4 4 3 Rest Whatever symptoms you experience during a relapse, the chances are that you will be much more tired than usual. Normal day to day activities may feel much more difficult. You know yourself best, so listen to your body. If you need a rest then do your best to take one. It is also really important to ask for help. This can be one of the hardest things for some people to do and the chances are that your friends and family really want to help but perhaps they just aren t sure what they can do. Talk to them and explain how they can help you. 4 Exercise Not much is known about the effect exercise has on relapse recovery. It is important not to push yourself too hard as fatigue can often be worse during a relapse. If you are struggling to do your normal activities such as getting washed and dressed, household chores and work, then it is recommended to conserve your energy for these. You can then gradually increase your activity levels as you feel able. If you are experiencing problems with strength, mobility, balance, muscle tightness or spasms, the physiotherapist in clinic may give you specific exercises to treat these problems. They can also give advice on ways to help continue with your normal activities. The physiotherapist may provide equipment to help, such as a walking aid or splint. They can also provide advice about staying healthy and help you get local support if needed.

5 5 5 Driving Anyone who has MS needs to notify the DVLA ( of their diagnosis but most people are able to continue to drive (there is more information on the MS Society and MS Trust websites). If your relapse causes symptoms that impact on your driving and you feel less sure or less confident in your ability to drive, then you must not drive until you feel safe to do so. If your symptoms continue and you are unsure whether you are safe to drive, there are Regional Driving Assessment Centres. You can find your nearest centre at: 6 Services at NHNN There are lots of services to support people with MS at the NHNN. These include physiotherapy, occupational therapy, neuro-psychology, speech and language therapy, neuropsychiatry, dietetics and bladder and bowel specialists. You can find out more information about these on the UCLH website or ask a member of the team. Your clinical team will discuss what services you require. 7 What to do if you think you are having a relapse in future If you think you may be experiencing another relapse it is important that you let your MS team know. They can then help you cope with the immediate problems you are experiencing. It is important to remember that relapses are a sign of active disease and getting the right help as early as possible may help to reduce any long term effects/damage. The range of treatment options is

6 6 always expanding and your MS team will be able to discuss the relevant options with you. If you are having frequent relapses it may well be that you need to consider another, more effective treatment. Your MS team is here to help. They would rather you called, even if it turns out that you re not having a relapse, than find out later on that you have struggled on your own. You can contact the MS nurses via NeuroDirect, available Monday to Friday (except Bank Holidays) 9am - 1pm. 8 Useful contact details NeuroDirect (MS Clinical Nurse Specialists): (Monday Friday, 9am-1pm except for Bank Holidays) Therapy services (physiotherapy, occupational therapy and speech therapy): Sources of further information DVLA driving advice: Equality at Work Act: MS Society: Managing a relapse: MS Society: Driving and DVLA: practical-and-financial-help/driving-and-dvla SymTrac App for tracking MS relapses: MS Trust information on disease-modifying drugs: MS Trust relapse information: MS TrustInformation: livingwithms/driving

7 10 How to find us 7

8 First published: October 2017 Date last reviewed: October 2017 Date next review due: October 2019 Leaflet code: NHNN/MS/MSRC/1 University College London Hospitals NHS Foundation Trust 8