About MND

What causes MND?

Many theories have been proposed - viral infection, environmental poisons, metabolic disturbance and genetic defects. Although the answer has not yet been found, research funded by Motor Neurone Disease Associations is expanding rapidly world-wide.
See Research.

How is it diagnosed?

Usually it is not difficult for a Neurologist to diagnose MND on the basis of the history and signs. Early signs may cause some initial difficulty. There is no specific laboratory test. Sometimes special tests, possibly including a brain and spine MRI, are necessary to exclude other diseases. Usually, electrical tests on muscles and nerves are performed and a lumbar puncture and muscle biopsy may be done.

How many people get MND?

Approximately one in 50,000 people will develop MND in any one year.

Motor Neurone Disease

Motor Neurone Disease is an incurable neurological condition that can leave people unable to do the everyday things that the rest of us take for granted. MND selectively affects the motor neurones, the cells that control voluntary muscle activity. Walking, talking and swallowing may become virtually impossible, yet the mind and senses remain intact in the majority of cases. It is a degenerative, life limiting disease with the rate of progression varying greatly from one person to another.

The average life expectancy for a person with MND is three to five years following diagnosis depending on the activity of the disease and the particular muscle groups affected. The disease strikes people from teens to old age but the majority is in the middle to older age groups.

There are approximately 300 people living with MND in Ireland at any one time. On average, 1 person is diagnosed with the disease every 4 days.

What help is available?

Many of the symptoms and subsequent problems can be effectively alleviated by your consultant or G.P. In addition, other professionals such as the physiotherapist, occupational therapist, nurse, social worker, speech therapist and dietician, can be an invaluable source of help. A range of leaflets dealing with specific problem areas is available from the
association on request.

What is Rilutek?

Rilutek (riluzole) is the first and, to date, only drug licensed for the treatment of Motor Neurone Disease. It is not a cure, it does not prevent, halt or reverse the disease but it has been shown to have an effect in extending life in both the limb and bulbar onset forms of MND. In studies, patients taking Rilutek were shown to have an increased life expectancy.

Life Expectancy

This is variable from three to five years (or occasionally longer) after onset, depending on the activity of the disease and the particular muscle groups affected.

MND presents itself in various ways, depending on the particular groups of muscle fibres which degenerate initially. Wasting and weakness of muscles of the hands, sometimes one side a first, stiffness in the legs with dragging of one leg or the development of marked weakness in the legs may be the initial symptom. Sometimes the muscles of the tongue and swallowing mechanism are affected early, with slurring of speech, difficulty in swallowing and coughing.

The disease may remain relatively stationary for some time or may progress to other limbs, to the tongue and to the breathing muscles. Death in MND is usually caused by the combined involvement of the swallowing and breathing muscles, causing a severe pneumonia.

Motor Neurone Disease does not cause bladder or bower symptoms and does not cause sensory, visual or hearing disorders.

Approximately 5-10% of people diagnosed with MND will have an inherited, or familial, form. This form of MND is extremely rare; the great majority of people diagnosed with MND (90-95%) have the sporadic form, occurring for no known reason.