Signs and symptoms

Early symptoms are often mild and may include:

• Stumbling due to weakness of leg muscles.
• Difficulty holding objects due to the weakness of hand muscles.
• Difficulty lifting arms or lifting objects due to weakness of shoulder muscles.
• Messier handwriting.
• Slurred speech or difficulty swallowing due to weakness of the tongue and throat muscles.
• Muscle cramps or spasms.
• Muscle twitching (fasciculations).
• Sometimes people experience changes in their thinking process and behaviour or laugh or cry more easily than before or at unexpected times.

Often only one area of the body is affected at first, e.g. left foot tripping, right hand weakness. Over time other areas of the body also become affected.

Everyone with MND is different in what they first notice, how their body is affected over time and how long they live. On average people live two to three years after diagnosis. This varies greatly with some people progressing faster, and some living 10 years or more. Some types of MND generally do not shorten the life (PLS).

There are ways that may help people to live longer with MND. A medicine called riluzole or Rilutek is used for the most common form of MND, ALS. Using breathing assistance early when it is needed and maintaining weight can also be helpful.

While it is often said that MND is not a painful condition, many people with MND do notice pain at times, e.g. from muscle cramps or pain in limbs, back or neck.

In the past it was said that MND does not affect the bladder or bowels. However, recent research suggests people with MND might need to urinate (pee) urgently or more often than before getting MND. The bowels might be affected with needing to poo more often. As the disease progresses, constipation is common. Changes in mobility can also make it harder to get to the toilet in time.

Some people notice lower energy levels, more saliva, difficulty sleeping, cold feet and hands, or lower appetite (eating less food). It is important not to lose weight if possible, so talk to a dietician if eating less or losing weight.

Some of these symptoms can be managed with medicines, so discuss them with your doctor if they bother you.

There is no specific test for MND. Diagnosis requires ruling out other possible conditions.