What is the prognosis for a case of MND?

On average, life expectancy for people correctly diagnosed with motor neurone disease is 27 months although some people survive much longer than this.

There is only one available drug, riluzole, that has any measurable effect on MND.

Riluzole (Rilutek) is the first effective treatment for people with ALS, and can be prescribed by a Neurologist or General Practitioner. It may:

  • extend person survival time by an average of 9-12 months
  • slow disease progression
  • keep people in the milder stages of disease for longer, thus contributing to quality of life.

People started on Rilutek soon after diagnosis show the greatest benefits. As with all drugs, some people may have a better response to Rilutek than others, and it is impossible to predict the benefits that each individual will gain. Neurologists will be able to provide guidance on the suitability of this treatment.

The most common side effects of Rilutek are weakness, nausea, a mild liver dysfunction and headache. Doctors may arrange for people to have regular blood tests to ensure that Rilutek isn’t causing side effects of which the person is not aware.

For more information please contact your Neurologist or telephone the Rilutek Hotline on 1800 00 58 58.

One of the most important things that newly diagnosed people can do is to register with their local MND Association to take advantage of their services. Australian MND Associations can be contacted through the MND Australia web site. MND Associations in other countries can be contacted through the International Alliance web site

The Associations can offer a variety of services, advice and opportunities.

1 Advice about the disease and its prognosis.

2 Advice about the management of the disease and its complications.

3 Advice about community services and how to access them.

4 Equipment and aids that minimise the disabilities.

5 The opportunity to influence the policies and activities of the State Associations and the Research Institute.

6 The opportunity to negotiate with government from a position of strength by ensuring that the Associations are truly representative of the MND community.

7 By making it easier for researchers to access all appropriate patients for drug trials and research projects.

8 By making our knowledge of the true MND situation more accurate.