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Multiple sclerosis

Multiple sclerosis

Everything you need to know about living well with multiple sclerosis

Introduction

Introduction

We are here to help answer some of these and hopefully help you understand how Multiple Sclerosis (MS) may affect your day to day life. In this short guide, we will also direct you to other helpful sources of information and advice so you can gain a fully comprehensive view of what MS is.

Only a specialist called a neurologist can give an MS diagnosis, and it can take some time. If you are concerned about any symptoms you read about here, please talk to your GP.

What is Multiple Sclerosis?

MS is a neurological condition of the central nervous system, which means it affects the brain and how the body functions.

Over 100,000 people in the UK have MS, and it affects three times as many women as men. Symptoms usually start in your 20s and 30s, but diagnosis can often take time as there is no single test that specialists can do to diagnose it.

We don't know the cause, and we haven't yet found a cure, but research is progressing quickly. Treatments for multiple sclerosis and specialists can help you to manage the condition and its symptoms.

Every person’s experience of MS is different, and there is no way of telling how it will affect your body and your lifestyle.

What causes Multiple Sclerosis?

Essentially, MS causes problems within the central nervous system, which is made up of the brain and spinal cord. It affects how the body manages messages and occurs when a substance called myelin, which usually protects the body’s nerve fibres, becomes damaged.

In MS, your immune system, which usually helps fight off infections, actually starts attacking and damaging myelin, mistaking it for a foreign body. This results in scarring of the nerve fibres creating ‘lesions’ or ‘plaques’. The damage to myelin and nerve fibres causes messages from the brain to the body to become slower or to not get through at all. Damage can become worse over time.

We know what causes MS within the body but we don’t yet understand why this occurs or what triggers it. There is lots of research underway to investigate this.

Did you know
MS is caused when the coating around the nerve fibres (called myelin) is damaged.

Types of Multiple Sclerosis

The ‘types’ of MS may also be referred to as ‘disease courses’. Your specialist healthcare professionals will determine what type of MS you have, but your diagnosis may change over time. Each person with MS will experience it differently, even if they have been diagnosed with the same type.

Types of Multiple Sclerosis

Relapsing-remitting MS (RRMS)

This is the most common of the various types of MS, and about 85% of people with MS are diagnosed as ‘relapsing-remitting’. This means that you may go through ‘relapses’, which are phases of new or old symptoms that come on quite quickly and last for around 4-6 weeks, although this differs from person to person and could be longer. The symptoms may then subside completely, or you may be left with a few lingering symptoms to manage, caused by lasting damage to the myelin in certain areas of the body. In this stage, you are considered to be ‘remitting’ and you may be able to continue daily life relatively normally.

It can be difficult to live with MS because it is so unpredictable, and you may feel anxious about when the next relapse will occur or how it will affect you. Relapses can range from mild to serious, but mostly you should be able to manage these at home with support from GPs, MS nurses and other healthcare professionals. Some factors such as stress and infections are thought to cause relapses to occur, and research is continuing in this area.

Disease Modifying Therapies (DMT) can be used to treat this type of MS and reduce how many relapses occur. The MS Society provides a lot of information about DMT, which you can read more about here.

Secondary progressive MS (SPMS)

Most people with relapsing-remitting MS will eventually develop secondary progressive MS, but this may be as long as 15 years after the initial diagnosis, differing from person to person. It generally means that your neurologist has seen evidence of at least six months of progressive symptoms which could mean you are experiencing increased disability or a wider range of disabilities, or have not recovered fully from recent relapses. It’s hard to diagnose though, because you may still have relapse phases as well.

There are ways to treat SPMS to reduce the effect of symptoms, including the use of steroids, disease-modifying therapies and mitoxantrone, which some people find effective.

Primary progressive MS (PPMS)

A further type of multiple sclerosis is usually diagnosed when the first or primary symptoms slowly get worse over time. People who are diagnosed later on in life, around age 40 to 50, are more likely to have PPMS, often because initial symptoms were very subtle and perhaps even misdiagnosed. PPMS symptoms gradually get worse in the long term, but there can be long periods of time when they seem to be staying level, with no noticeable changes.

Benign MS

Some people can experience Benign MS, which is a term used to describe Multiple Sclerosis that may cause mild symptoms but has not caused any disability after a period of 15 years or more. However, a relapse could occur because MS is still causing damage to the brain and spinal cord.

MS in children

Children and teenagers can develop MS and people who have the condition often feel their symptoms may have started before they were 16 years old. For more information about how children experience MS or diagnosing a child with MS, please visit the MS Society website.

Did you know
Symptoms of MS usually start in your 20s and 30s and can be varied.
Multiple Sclerosis symptoms

Multiple Sclerosis symptoms

One person may only have a few symptoms that come and go. Others may have lots of symptoms that last for varying amounts of time. Periods when symptoms get worse are known as "relapses", and when symptoms improve or disappear they are called "remissions".

The early signs of MS are often symptoms of other conditions. This can make a Multiple Sclerosis diagnosis quite difficult. If you are having any of the symptoms below, talk to your GP.

The MS Trust describes the more common first symptoms that you may experience as follows:

  • Fatigue/overwhelming exhaustion
  • Stumbling more than usual
  • Strange feelings in the skin (pins and needles or numbness)
  • Slowed thinking
  • Problems with vision such as blurring, a blind spot, light flashes or colours not appearing as they should

You may only experience one or two of these symptoms. Everyone’s MS is different. There are a number of other possible symptoms that may be experienced:

  • Balance/walking: including problems with coordination, tremor and muscle weakness, stiffness or spasms
  • Dizziness
  • Thinking, learning and memory problems such as difficulty concentrating or multitasking or finding problem-solving or learning new things difficult
  • Joint/muscle pain, painful sensations
  • Toileting problems: this is quite a common symptom, and a person may feel they need to pee more frequently or even go by accident. They may also become more constipated than usual
  • Speech and swallowing: some people may find that chewing or swallowing becomes difficult, or that their speech becomes slurred
  • Anxiety and low mood

There are lots of ways to manage these symptoms so you can continue your daily life as independently as possible. Equipment called ‘daily living aids’ can help with mobility and ensure you can live independently and safely.

Products

At Healthcare Pro, we offer a huge range of equipment that can help those who are older, or have a health condition, live more independently. Below you’ll find some of our most popular products which can help relieve some of the symptoms of Multiple Sclerosis and enable those living with the condition to do more things for themselves – whether at home or when out and about.

 

Did you know
Research is progressing quickly, but we still don’t know the cause of MS and it can’t be cured yet.

Living with Multiple Sclerosis

Learning that you have MS can be difficult to take in. It is likely you will experience a range of emotions upon being diagnosed. Many people with multiple sclerosis live well and can continue with many of the activities they have always done, such as hobbies, family life, social life and going to work. Here, we consider practical information such as what MS products are available, treatments for Multiple Sclerosis that you may be able to undertake, and how diet and exercise can help you.

Living with Multiple Sclerosis

Impact on daily living

MS can impact daily living in a number of ways but it depends on the symptoms you have. MS can affect your mobility, making it harder for you to get around inside or outside the home. This may be caused by several factors including, for example, dizziness, loss of balance, muscle spasms, aches and pains and tremors or stiffness. Often you will be able to continue doing what you have always done, but many people find that mobility aids can help them stay independent for longer. Some of the more common mobility or ‘daily living’ aids that people use include:

Walking sticks or rollators

Both these items help you walk safely inside and outside your home, while grab rails placed in appropriate areas around the home can provide balance support.

Bathing and using the toilet

If you’re finding it difficult to have a shower, take a bath or use the toilet, there are many products that can make this easier such as shower stools, bath lifts and toilet frames.

Eating and drinking

If you have difficulty gripping cutlery or cups, there are many types of larger handled cutlery and non-spill mugs available that make eating and drinking easier.

If you are experiencing any difficulties with mobility or are finding your condition is affecting your independence, speak to your local social services who can arrange an assessment by an Occupational Therapist (OT). They will look at the daily activities you are having difficulties with and suggest equipment or home adaptations that will help. They will look at how you do certain activities and suggest ways you can do them differently.

If you need further advice about equipment for Multiple Sclerosis, the Disabled Living Foundation can also help.

Multiple Sclerosis treatments

There are a number of treatments for multiple sclerosis, including medicines, physiotherapy and complementary or alternative therapies. These can help treat symptoms and the severity of relapses, but they do not cure the condition. We have summarised some key treatments for multiple sclerosis below, but there are other options depending on the type of MS you have or the particular symptoms you’re experiencing. Talk to your GP or MS Nurse, as there are likely to be healthcare professionals who can help you.

Disease modifying therapies (DMTs)

One of the current, key treatments for multiple sclerosis is the use of disease-modifying drugs that can help slow down the damage caused by relapses and reduce the frequency of them. DMTs try to reduce the amount of damage and scarring to the myelin around your nerves. There are a number of drug treatments that may be prescribed for you, including a group called ‘beta interferon’.

For more information on the drug treatments for Multiple Sclerosis, visit the official MS Trust website

Physiotherapy

Physiotherapy can help if you have symptoms such as mobility or balance problems, fatigue, muscle spasms, muscle stiffness or bladder problems. Speak to your GP or MS Nurse if you think you would benefit from this type of multiple sclerosis treatment. For example, if you’re having difficulties with speech, a speech and language therapist can advise the best course of treatment. Find out more about what physiotherapists do.

Complementary and alternative therapies

There are a host of therapies that are not considered ‘medical’ but which some people believe help them to manage their multiple sclerosis symptoms, help them to relax or improve their sense of wellbeing, for example:

  • Magnetic field therapy
  • T’ai chi
  • Fish oils
  • Reflexology
  • Massage
  • Neural therapy

Talk to your doctor before embarking on any alternative therapies to ensure they will not interfere with any medical treatment you’re receiving, and research the provider thoroughly.

Multiple Sclerosis diet

Healthy eating is important for everybody, but especially people living with long term health conditions and many people with MS claim to feel better when they eat nutritionally balanced meals.

The Swank Diet is a special MS diet that some people believe help them feel better or relapse less frequently. Similarly, the Best Bet Diet, the Paleo diet and the Overcoming MS programme are other diets for MS, but research into the effectiveness of these is inconclusive.

People often ask if there are supplements for MS. If you’re eating a healthy, varied diet, you should be getting enough vitamins in your food, but a dietitian can advise if you need any additional supplements.

Exercises for Multiple Sclerosis

Exercise can help develop strength and fitness in order to help manage weight, improve overall health, and keep the body strong and fit, which can help reduce the effects of some of the symptoms of MS.

There are no specific ‘MS exercises’ but if you need advice on what kind of exercises would benefit you, speak to a physiotherapist. There may be specific exercises that can help with the MS symptoms you are experiencing, for example, yoga can help reduce muscle stiffness.

Multiple Sclerosis and employment

Many people with MS continue to work after they’re diagnosed. You may need to talk to your employer about your situation and discuss any issues or symptoms that may make it more difficult for you to do your job. Fatigue, stress, travel, sitting or standing all day can all make symptoms worse. Some people with MS do change jobs or decide they are no longer able to work. Everyone is different, and you will know what is right for you. The National multiple sclerosis Society points you to self-assessment tools that may help you evaluate your situation.

Did you know
Around 100,000 people in the UK have MS.

Support

There is lots of MS support for people living with the condition and also for their families and carers. There is a network of health and social care professionals such as your GP, MS Nurses, Occupational Therapists and Physiotherapists that can support you.

Support

Resources

Brain & Spine Foundation – provides expert support to people affected by neurological problems

Disabled Living Foundation – a national charity providing impartial advice, information and training on independent living

Multiple Sclerosis Trust – a UK charity that produces MS information you can trust and supports MS specialist health professionals

MS UK – a small national charity dedicated to empowering people affected by MS

MS Society – a community of people living with MS, scientists, campaigners, volunteers and fundraisers

National MS Society – a movement focused on stopping MS in its tracks

NHS – helps to explain health conditions in more detail

Did you know
MS affects almost three times as many women as men.

Glossary

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of multiple sclerosis as straightforward as possible.

Central Nervous System

– the central nervous system (CNS) is made up of the brain and spinal cord. It is responsible for controlling all the functions in the body

Myelin

– an insulating sheath around many nerve fibres, which enables messages to travel quickly between the brain and the rest of the body

Disease modifying therapies (DMTs)

– a group of treatments for people with relapsing multiple sclerosis which reduce the number and severity of relapses

Mitoxantrone

– a drug that can be used in MS as a disease-modifying drug (DMD) to reduce the number of relapses a person is experiencing

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