NNUH - Our vision Norfolk and Norwich University Hospitals
Print this page

Living with MS

You may have to adapt your daily life if you’re diagnosed with multiple sclerosis (MS), but with the right care and support many people can lead long, active and healthy lives.

Self–care

Self-care is an integral part of daily life. It means you take responsibility for your own health and wellbeing, with support from people involved in your care.

Self-care includes the things you do each day to stay fit, maintain good physical and mental health, prevent illness or accidents, and effectively deal with minor ailments and long-term conditions.

People living with long-term conditions can benefit enormously from being supported to care for themselves. They can live longer, have a better quality of life, and be more active and independent.

Regular reviews

Although you’ll probably be in regular contact with your care team, you should also have a comprehensive review of your care at least once a year.

This is a good opportunity to discuss your current treatment, mention any new problems you’ve having, think about any further support you may need and be kept informed about any new treatments that are available.

Make sure that you let your care team know about any symptoms or concerns you have. The more the team knows, the more they can help you.

Healthy eating and exercise

There’s no special diet that has been proven to slow the progression of MS, but a generally healthy, balanced diet can help you manage specific problems such as fatigue and constipation. It can also reduce your risk of other health problems, such as heart disease.

Regular activity and exercise is important for both general health and fitness. Research has shown specific benefits of exercise for people with MS, including reduced fatigue and improved strength, mobility, and bowel and bladder function.

Stopping smoking

Smoking is associated with an increased risk of a wide range of health conditions and it may also increase the speed at which MS gets worse.

If you smoke, stopping may help to slow the progression of your MS.

Keeping well

If you have significant disability related to MS, you’ll usually be encouraged to get a flu jab each autumn.

However, vaccines that contain live organisms – such as the BCG (TB) vaccine and one form of the shingles vaccine – may not be suitable if you’re having treatment with some (but not all) of the disease-modifying therapies.

These treatments can weaken your immune system, which means live vaccines may not work or could make you ill.

Further information:

Relationships, support and care

Coming to terms with a long-term condition such as MS can put a strain on you, your family and your friends. It can be difficult to talk to people about your condition, even if they’re close to you.

Dealing with the deterioration of symptoms, such as tremors and increasing difficulty with movement, can make people with MS very frustrated and depressed. Inevitably, their spouse, partner or carer will feel anxious or frustrated as well.

Be honest about how you feel and let your family and friends know what they can do to help. Don’t feel shy about telling them that you need some time to yourself, if that’s what you want.

Support

If you have any questions, your MS nurse or GP may be able to reassure you or let you know about the other support that’s available. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline.

Some people find it helpful to talk to other people who have MS, either at a local support group or in an internet chatroom.

Care and support services

It’s worth taking time to think about your specific needs and what you might need to achieve the best quality of life. For example, if your balance and co-ordination are affected, you may want to think about equipment and home adaptations.

It may be useful to read your guide to care and support. It includes information and advice on:

 Further information: 

Having a baby

Being diagnosed with MS shouldn’t affect your ability to have children. However, some of the medication prescribed for MS may affect fertility in both men and women.

If you’re considering starting a family, discuss it with your healthcare team, who can offer advice.

Pregnancy

Women with MS can have a normal pregnancy, deliver a healthy baby and breastfeed afterwards.

Having a baby doesn’t affect the long-term course of MS. Relapses tend to be less common in pregnancy, although they can be more common in the months after giving birth.

You may need to continue taking medication throughout your pregnancy. However, some medication shouldn’t be taken during pregnancy, so it’s important to discuss this with your healthcare team.

Further information: 

Money and financial support

If you have to stop work or work part-time because of your MS, you may find it difficult to cope financially. You may be entitled to one or more of the following types of financial support:

Further information:

 Driving

If you’ve been diagnosed with MS, you must tell the Driver and Vehicle Licensing Agency (DVLA) and also inform your insurance company.

In many cases, you’ll be able to continue driving, but you’ll be asked to complete a form providing more information about your condition, as well as details of your doctors and specialists. The DVLA will use this to decide whether you’re fit to drive.

Further information: 

Information taken from: https://www.nhs.uk/conditions/multiple-sclerosis

Leaflets

  • MS Specialist Nurse Service
  • MS Specialist Nurse Disease Modifying Therapy Clinic

Charities

The MS Society

 

The MS Society is the UK’s leading MS charity. Since 1953, we’ve been providing information and support, funding research and fighting for change. It supports people affected by MS and works to enable everyone affected by MS to live to their full potential as members of society by improving their conditions of life, and it promotes research into MS and allied conditions.

 

Tel: 0808 800 8000

www.mssociety.org.uk

Multiple Sclerosis Trust

 

Providing information that can be trusted, supporting the MS specialist you need

 

 

 

Tel: 0800 032 3839

www.mstrust.org.uk

The Multiple Sclerosis Therapy Centre 

The Multiple Sclerosis Therapy Centre Norfolk [MSTCN] is a registered charity providing services, information and support to all those affected by a long term neurological condition. It is a member of the UK national MST organisation.

 

 

 

Tel: 01603 485933/488561

www.mstcn.org.uk

Multiple Sclerosis Research Treatment and Education (MS Research)

Multiple Sclerosis Research Treatment and Education (MS Research) is a national charity dedicated to furthering our understanding and developing better treatments

Tel: 0117 958 6986

www.ms-research.org.uk

Contacts

MS Specialist Nurse Service

East Outpatients Level 4

Norfolk and Norwich University Hospital

Colney Lane

Norwich

NR4 7UY

Tel: 01603 287268

NeurologySpecialistNurses@nnuh.nhs.uk

If you require urgent medical advice please contact your GP or if out-of-hours 111 service.

Otherwise you can contact the telephone number listed above which is an answer phone service.  Please leave the following information:

  • Your full name
  • Hospital number or date of birth
  • A telephone number you can be called back on
  • The reason for your call

The MS nurses will listen to your call and book you into the telephone advice clinic which is on a Tuesday afternoon and a Friday morning.  Please indicate in your message which clinic you would like to be booked into.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Generic information to be added which is relevant to all diseases:

 

Carers Information

 

Making or changing an appointment

 

Transport

 

Parking

 

Coming to an appointment

 

Benefits