Focus on Disability - For Disabled People, the Elderly and their Carers in the UK

Multiple Sclerosis – A Guide

Focus on Disability - For Disabled People, the Elderly and their Carers in the UK

Multiple sclerosis (MS) is the most common neurological condition in young adults in the UK, affecting around 85,000 people.

Introduction
Symptoms
Causes
Diagnosing multiple sclerosis
Treating multiple sclerosis
Living with multiple sclerosis

Introduction

There are three main types of MS:

  • relapsing remitting MS
  • secondary progressive MS
  • primary progressive MS

About the disease

MS is a condition of the central nervous system (the brain and spinal cord). The central nervous system controls the body’s actions and activities, such as movement and balance.

Each nerve fibre in the central nervous system is surrounded by a substance called myelin. Myelin helps messages from the brain to travel quickly and smoothly to the rest of the body.

In MS, the myelin becomes damaged. This disrupts the transfer of these messages.

Who is affected

MS can occur at any age, but symptoms are mostly first seen between the ages of 20 and 40. Women are more than twice as likely to develop MS as men.

Outlook

MS is a lifelong condition, but it is not terminal. Most people with MS can expect to live as long as someone without the condition. However, a minority of patients (about 20%) with MS have a considerably shortened life.

Symptoms of multiple sclerosis

The central nervous system (brain and spinal cord) controls all your body’s actions. When MS causes damage to the nerve fibres that carry messages to and from your brain, symptoms can occur in any part of your body.

There are many different symptoms of MS and they affect each person differently. Some of the most common symptoms include:

  • numbness and tingling
  • blurring of vision
  • problems with mobility and balance
  • muscle weakness and tightness

Most people with MS only have a few of these symptoms and it is very unlikely that someone would develop all possible symptoms.

The symptoms of MS are unpredictable and some people’s symptoms develop and worsen steadily over time, while for other people they come and go periodically. Periods when your symptoms get worse are known as relapses. Periods when your symptoms improve or disappear are known as remissions.

Visual problems

In a quarter of cases of MS, the first symptom is inflammation (swelling) of the optic nerve, which transmits visual information to the brain. This is known as optic neuritis and usually only affects one eye. It causes pain behind your eyeball, loss of vision and colour blindness.

MS can also cause double vision, pain in both eyes and difficulty focusing (known as nystagmus).

Muscle spasms and spasticity

MS can cause damage to the nerve fibres in your central nervous system. This can cause your muscles to contract tightly and painfully (spasm). Your muscles may also become stiff and resistant to movement, which is known as spasticity.

Pain

Pain is common in MS. The two types of pain that can occur as a result of MS are neuropathic and musculoskeletal pain.

  • Neuropathic pain is caused by damage to the nerve fibres in your central nervous system. It can be stabbing pains, extreme skin sensitivity or burning sensations.
  • Musculoskeletal pain is not caused directly by MS, but can occur if there is excess pressure on your muscles or joints as a result of spasms and spasticity.

Mobility problems

MS can affect your balance and co-ordination. It can make walking and moving around difficult, particularly if you also have muscle weakness and spasticity.

  • You may experience difficulty with co-ordination, called ataxia.
  • Shaking of the limbs (tremor) is rare but can be severe.
  • Dizziness can happen late on and can make you feel as if your surroundings are spinning (vertigo).

Cognitive problems

Cognitive problems refer to problems with mental processes, such as thinking and learning. These usually occur when MS is severe. The problems may be temporary or permanent. You may have trouble remembering and learning new things, problems with attention and concentration, slowed or confused speech, and reduced mental speed.

Emotional problems

If you have MS, you may find yourself laughing or crying for no reason, and you may also be more likely to experience depression or anxiety.

Fatigue and tiredness

Extreme tiredness (fatigue) may be your main symptom of MS. You may find that fatigue causes your other symptoms s(uch as problems with balance, vision and concentration) to get worse.

Bladder problems

MS can make your bladder either overactive or underactive. If it is overactive, your bladder may contract when it is not full, causing incontinence. If it is underactive, you may find that your urine flow is interrupted and your bladder does not feel empty.

Bowel problems

MS often causes constipation but may also cause bowel incontinence.

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Types of multiple sclerosis

The symptoms of MS are unpredictable. Some people’s symptoms develop and get worse over time, while other people’s symptoms come and go periodically.

Periods when your symptoms get worse are known as relapses. Periods when your symptoms improve or disappear are known as remissions.

A relapse in MS is defined as a period of at least 24 hours in which new symptoms appear or previous ones worsen. Relapses can occur at any time and may vary in severity. Sometimes, a short-lived worsening of your symptoms can be caused by other factors, such as hot weather or exercise. This does not necessarily mean that you are having a relapse.

There are three types of MS. They are characterised by the pattern of relapse and remission that the symptoms follow.

  • Relapsing remitting MS (RRMS)
    Relapsing remitting MS (RRMS) is the most common type of MS. It is characterised by numerous relapses and remissions. Relapses may last for days, weeks or months. You may experience new symptoms each time, or a recurrence of previous ones. After each relapse, you may recover completely. However, many people’s symptoms improve but do not disappear altogether.
  • Secondary progressive MS (SPMS)
    Secondary progressive MS (SPMS) follows on from RRMS. It is characterised by a steady worsening of symptoms, with or without relapses. Studies show that most people with RRMS go on to develop this form of MS, on average 15-20 years after the onset.
  • Primary progressive MS (PPMS)
    Primary progressive MS (PPMS) is the rarest form of MS. If you have this form of MS, symptoms will get steadily worse with no distinct relapses or remissions.

Benign MS (BMS)

If you have had no symptoms for 10 to 15 years, you may be told that you have benign MS (BMS). Benign MS is characterised by a small number of relapses followed by a complete recovery each time. There is no guarantee that MS is ever gone for good and it is even possible to have a relapse after many years of no symptoms.

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Causes of multiple sclerosis

Multiple sclerosis (MS) occurs because of damage to the nerve fibres of the central nervous system. Your central nervous system consists of your brain and spinal cord and is responsible for controlling every action, conscious and unconscious, of your body.

When you perform an action, your brain sends messages to the appropriate part of your body through the nerve fibres in your spinal cord. These nerve fibres are covered by a substance called myelin. Myelin insulates the nerve fibres and helps carry messages to and from your brain quickly and smoothly. In MS, the myelin around your nerve fibres becomes damaged. This disturbs the messages coming to and from your brain.

MS is an autoimmune condition. This means that your immune system mistakes the myelin for a foreign substance and attacks it. The myelin becomes inflamed in small patches (called plaques or lesions), which can be seen on an MRI scan. This process is called demyelination.

Demyelination disrupts the messages travelling along nerve fibres. It can slow them down, jumble them, accidentally send them down a different nerve fibre or stop them from getting through at all.

When the inflammation goes away, it can leave behind scarring of the myelin sheath and sometimes damage to the underlying nerve cell. The progressive types of MS are due to the accumulated damage to these nerve cells.

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Why do people develop multiple sclerosis?

MS is an autoimmune condition in which your immune system attacks myelin on the nerve fibres of your central nervous system. It is not understood what causes this autoimmune response, although there are several theories.

Most experts agree that MS is probably caused by a combination of genetic and environmental factors. This means that it’s partly due to the genes you inherit from your parents and partly due to outside factors that may trigger the condition.

Genetic factors

MS is not defined as a genetic condition because there is no single gene that causes it. It’s not directly inherited, although research has shown that people who are related to someone with MS are more likely to develop it. For example, if your mother has MS, you’re 40 times more likely to develop it than normal. However, the chances of MS occurring more than once in a family are still very small, and there is only a 2% chance of a child developing MS when a parent has it.

It’s likely that different combinations of genes make developing MS more likely, and research into this is continuing. However, genetic theories cannot explain the wide variation in occurrences of MS throughout the world.

Environmental factors

Research into MS around the world has shown that it’s more likely to occur in countries that are far from the equator. For example, MS is relatively common in the UK, North America and Scandinavia, but hardly ever occurs in Malaysia or Ecuador.

Bacteria and viruses

The reason for the distribution of MS around the world is not fully understood, but it’s thought that MS could be triggered by a particular bacteria or virus that thrives in a cooler environment. Some experts believe that a common childhood infection in these cooler countries may disturb the immune system or trigger an autoimmune response in some people, which develops into MS.

As yet, no bacteria or virus has been identified to back up this theory. However, research has shown that people over the age of 15 who move away from countries nearer the equator to a cooler climate have a lower risk of developing MS than those who were born there.

Vitamin D

Other research has focused on the idea that people living further from the equator are exposed to less sunlight and, therefore, have less vitamin D in their body. Some studies have found a link between lower levels of vitamin D and incidence of MS.

Some researchers have suggested that vitamin D supplements may reduce the risk of MS. However, this has not been proven.

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Diagnosing multiple sclerosis

If you have unexplained symptoms that are similar to those of multiple sclerosis (MS), see your GP. If your GP suspects MS, they will ask you for a detailed medical history, including past signs and symptoms as well as the current state of your health.

Your GP can refer you to a neurologist (a specialist in conditions of the central nervous system). If your GP suspects that you have MS, you should see a neurologist within six weeks.

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Diagnostic tests

Diagnosing MS is complicated because no single laboratory test can positively diagnose it. Several conditions have symptoms that are similar to those of MS, so your neurologist may rule them out first.

To confirm a diagnosis of MS, your neurologist may carry out a number of tests.

Neurological examination

Your neurologist will look for changes or weakness in your eye movements, leg or hand co-ordination, balance, speech and reflexes. This will show whether any of your nerve pathways are damaged.

Magnetic resonance imaging (MRI) scan

A magnetic resonance imaging (MRI) scan creates a detailed image of your brain and spinal cord. The procedure is painless and usually takes between 10 and 30 minutes. A standard MRI scanner is like a giant tube or tunnel. You may feel claustrophobic when going into the tunnel and the machine is noisy. Tell your neurologist if you have any concerns about this experience.

MRI scans can show whether there is any damage or scarring of the myelin in your central nervous system. Over 90% of people with MS are diagnosed using an MRI scan.

Evoked potentials test

An evoked potentials test involves placing small electrodes on your head. These monitor how your brain waves respond to what you see and hear. It is painless and can show whether it takes your brain longer than normal to receive messages.

Lumbar puncture

A lumbar puncture is also sometimes called a spinal tap. A sample of your cerebrospinal fluid (the fluid that surrounds your brain and spinal cord) is taken using a needle inserted into the area around your spinal cord.

This is done under local anaesthetic, which means that you will be awake but the area that the needle goes into will be numbed. The sample is tested for antibodies, the presence of which means that your immune system has been fighting a disease in your central nervous system.

A lumbar puncture is usually only needed if other tests for MS are inconclusive, or for a diagnosis of primary progressive MS.

Blood tests

Blood tests are usually performed to rule out other causes of your symptoms, such as vitamin deficiencies. In addition, antibody tests may be required, for example to rule out a special type of MS called Devic’s disease.

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Diagnosing the different types of multiple sclerosis

Once a diagnosis of MS has been made, your neurologist may be able to identify which type of MS you have.

However, this often only becomes clear over time as the symptoms of MS are so varied and unpredictable. This is particularly true of benign MS (BMS), which can only be diagnosed once you have been free of symptoms for 10-15 years.

A diagnosis of relapsing remitting multiple sclerosis (RRMS) may be made if:

  • you have two relapses of your symptoms more than 30 days apart, or
  • you have one relapse and an MRI scan shows new myelin damage or scarring three months later

A diagnosis of secondary progressive multiple sclerosis (SPMS) may be made if:

  • you have had relapses of your symptoms in the past, and
  • you have become steadily more disabled for at least six months, with or without relapses

A diagnosis of primary progressive multiple sclerosis (PPMS) may be made if you have had no previous relapses of your symptoms, and:

  • you have become steadily more disabled for at least one year
  • an MRI scan shows damage and scarring to myelin
  • a lumbar puncture shows that there are antibodies in the fluid surrounding your brain and spinal cord

Uncertain diagnosis

In some cases, your neurologist may not be able to say for certain whether you have MS. This can happen when the test results are unclear, for example if your symptoms and lumbar puncture results point towards MS but there is no sign of myelin damage on the MRI scan.

If this is the case, your neurologist may tell you that you have possible MS. You may have to wait for your symptoms to relapse before a definite diagnosis can be made.



Treating multiple sclerosis

What is good care for multiple sclerosis?

The Department of Health has developed a National Service Framework (NSF) for long-term neurological conditions. The NSF was developed in consultation with people with long-term neurological conditions to raise standards of treatment, care and support across health and social care services.

It helps health and social care professionals to plan and deliver services that are:

  • quicker and easier to use
  • more closely matched to people’s needs
  • better co-ordinated so people don’t have to see too many professionals and tell them the same information repeatedly
  • planned around the views of people with long-term neurological conditions and their carers
  • able to give people more choice about how and where they get treatment and care
  • better at helping people to live more independently

The National Institute for Health and Clinical Excellence (NICE) has published a clinical guideline for MS. The guideline provides comprehensive evidence-based information on the benefits and limitations of the various methods of diagnosing, treating and caring for people with MS. This helps health professionals and patients decide on the most appropriate treatment.

The NICE guideline states that if you have MS, you should have access to a specialist neurological rehabilitation team, including specialist nurses, physiotherapists, occupational therapists, speech and language therapists and social workers. You should have a way of contacting that team, for example by calling an MS specialist nurse. You should have someone who gives you reliable information about MS and its symptoms and treatments, and the wider issues that can affect people with the disease and their family or carers.

Living with multiple sclerosis

A diagnosis of MS is life changing. You may need long-term treatment to control your symptoms and you may have to adapt the way you do daily tasks.

Self-care

Self-care is an integral part of daily life. It means that you take responsibility for your own health and wellbeing, with support from the 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 if they receive support for self-care. They can live longer, have less pain, anxiety, depression and fatigue, have a better quality of life, and be more active and independent.

Regular reviews

Because MS is a long-term condition, you’ll be in regular contact with your healthcare team. A good relationship with the team means that you can easily discuss your symptoms or concerns. The more the team knows, the more they can help you.

Keeping well

Everyone with a long-term condition such as MS is encouraged to get a flu jab each autumn to protect against flu (influenza). It’s also recommended that they get an anti-pneumoccocal vaccination. This is a one-off injection that protects against a specific serious chest infection called pneumococcal pneumonia.

Healthy eating and exercise

Regular exercise and a healthy diet are recommended for everyone, not just people with MS. They can help prevent many conditions, including heart disease and many forms of cancer. Try to eat a balanced diet, containing all the food groups, to give your body the nutrition it needs. Exercising regularly can help relieve stress and reduce fatigue.

For more information see the Overcoming Multiple Sclerosis website which has a whole range of resources covering MS as a condition and advice for those it affects: https://overcomingms.org/



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