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Motor neurone disease (MND)

Published by Bupa's health information team, June 2009.

This factsheet is for people who have motor neurone disease, or who would like information about it.

Motor neurone disease (MND) is the name given to a group of rare diseases that affect nerve cells in the brain and spinal cord leading to muscle weakness and wasting.

About motor neurone disease (MND)
Symptoms of motor neurone disease (MND)
Causes of motor neurone disease (MND)
Diagnosis of motor neurone disease (MND)
Treatment of motor neurone disease (MND)
Help and support
Questions and answers
Related topics
Further information
Sources

About motor neurone disease (MND)

Around four or five in every 100,000 people in the UK have MND at any one time. It usually starts between the ages of 50 and 70 but can occur at any age. Men may be up to twice as likely as women to be affected.

Research is underway to understand the causes of MND and to develop an effective treatment. Currently there is no cure and life expectancy depends on how symptoms progress. However, there are effective treatments to manage symptoms.

What is motor neurone disease?

Your brain sends instructions as electrical impulses along nerve cells called motor neurones to muscles that control voluntary movement, such as walking and swallowing. MND is a disease that gradually destroys these nerve cells and this leads to weakness and wasting of your muscles.

Types of motor neurone disease

There are three main types of the disease, which affect different groups of nerves.

Amyotrophic lateral sclerosis (ALS) affects around half of people with MND. This mainly causes muscle weakness and stiffness.
Progressive bulbar palsy (PBP) affects about a quarter of people with MND. This makes speaking and swallowing difficult.
Progressive muscular atrophy (PMA) affects about a quarter of people with MND. This causes muscle weakness, wasting and twitching.

Symptoms of motor neurone disease (MND)

MND develops at different speeds in different people and affects individuals in different ways.

The disease usually begins very gradually and you may just feel tired to start with. Clumsy fingers and a weak grip are often the first symptoms of muscle problems.

The following symptoms can occur in MND, but you may also have these symptoms without having this condition:

pain and discomfort
muscle cramps, spasms or twitching
stiff joints
constipation - due to restricted movement or change in diet
excess saliva or difficulty swallowing saliva
coughing or a feeling of choking
breathing problems
depression

Although thinking and reasoning aren't usually affected, around one in five people with MND will have some level of intellectual difficulty or a change in personality.

As the disease progresses you may develop a number of problems, including the following.

Muscle weakness in your arms, hands and legs may make every day tasks more difficult, such as turning taps or door handles, brushing hair or fastening buttons. Raising your foot with each step may be difficult, causing your feet to drag on the floor ("foot-drop"). It may be difficult to hold your head upright if your neck muscles weaken.
Your throat muscles may be affected and this may lead to difficulties in swallowing and speech.
You may laugh or cry more easily - this may be due to physical changes caused by the disease, rather than changes in how you're feeling.
The muscles of your chest wall may be affected, leading to breathing difficulties.
You may develop pneumonia.

However, the different forms of MND affect people in different ways. There can be a great deal of overlap between all of these forms and this is particularly true as the disease progresses.

MND doesn't usually affect:

your senses - smell, taste, touch, sight and hearing
your eye and heart muscles
your bladder and bowel control, so incontinence isn't usually a problem
sexual function - until the later stages of the disease

Causes of motor neurone disease (MND)

For the vast majority of people with MND, there is no history of the disease in any immediate family members (grandparents, parents, brothers or sisters). This is called sporadic MND, because the disease appears for no apparent reason.

In a small number of people the disease runs in the family, indicating an inherited link.

Diagnosis of motor neurone disease (MND)

There is no single diagnostic test for MND. The diagnosis is usually made based on symptoms and what a neurologist (a doctor who specialises in conditions of the nervous system) finds when examining you. Your doctor will try to rule out other neurological conditions.

Your doctor will ask you about your symptoms and examine you. He or she may also ask you about your medical history.

Tests to help diagnose MND include:

an electromyelogram (EMG) - this test uses fine needles to measure the electrical activity of muscles
nerve conduction tests - an electrical impulse is applied through a small pad on the skin - this measures the speed at which your nerves carry electrical signals
transcranial magnetic stimulation (TMS) - this measures the activity of the nerves that run from your brain to your spinal cord
a magnetic resonance imaging (MRI) scan - this uses magnets and radiowaves to produce images of the inside of your body

Treatment of motor neurone disease (MND)

Medicines

The only medicine currently available to treat MND in the UK is riluzole (eg Rilutek). It's not a cure but has been shown to slow down the progress of the disease by a few months. The National Institute for Health and Clinical Excellence (NICE), which advises the NHS on new treatments, has recommended riluzole for the treatment of the ALS form of the disease.

A mask ventilator system to wear at night while you're asleep may slow the progress of MND by a few months. The machines are small and easily carried. There are different types of mask available, so you should be able to find one that suits you.

There is a range of medication and treatments available to help you manage the symptoms of MND. Discuss your symptoms with your GP so that they can be effectively managed.

Newer treatments

Researchers are continually improving their understanding of MND and investigating new treatments. Recent scientific discoveries that may lead to future treatments include:

a protein called TDP-43, which has been shown to be involved in the damaged motor neurones
other types of brain cell (microglia and astrocytes), which are thought to have an important role in MND
faulty genes, which may be involved in the development of MND

A number of treatments are currently being investigated in clinical trials, but doctors won't know if they help MND until the trials are finished.

Scientists are also investigating the possibility of using stem cells to treat the condition. Stem cells are the body's 'master cells', which can divide and turn themselves into any type of cell.

Complementary therapies

Many people living with MND find that the use of complementary therapies can help make day-to-day life more comfortable. It's generally thought that relaxation can help to reduce anxiety and stress associated with MND.

You should always talk to your GP before starting any complementary therapies, to make sure that the therapy isn't harmful and is compatible with any other medicines you're taking. Make sure that the practitioner is fully qualified and registered. Your GP may be able to advise you.

Help and support

Physiotherapists, occupational therapists and speech therapists can all offer you advice and support. The support of your family and friends is invaluable and can help with the inevitable bouts of anxiety and stress.

Patient associations, such as the Motor Neurone Disease Association, provide information and services that can make life easier and more comfortable. Contacting other people who have MND through charities and patient groups can be a good source of support and advice.