Diagnosis: Possible causes of MND (including familial MND) 

Possible causes of MND (including familial MND)

Sporadic MND

Most people who develop MND have 'sporadic' MND - this means there is no family history, and it is extremely unlikely to develop in other family members. (See below for familial or inherited MND). Little is known about what causes sporadic MND. Several possible factors have been suggested, including exposure to chemicals, fractures and injuries, smoking, military service, and engaging in some sports or high levels of exercise, but research studies have so far failed to find clear conclusive evidence. Probably lots of different factors are involved, and in any one person MND is likely to occur for complex reasons, rather than there being any single cause. Several factors may increase the risk of developing MND or may help to 'trigger' it, but may not be enough in themselves to cause it. The MND Association has summarised the research evidence on their website.


Some people we talked to felt there was little point worrying about what had caused their condition or whether they had done something to cause it. Lots of people asked themselves 'Why me?' but at the same time many felt it was important that people should not blame themselves. Some also pointed out that it would not make any difference to their condition even if they did know what caused it. 

 

 

Not knowing what had caused their condition was frustrating for some people. While some could live with the idea that it was just chance, others struggled with this idea, especially if they and their families had always been very fit and healthy. 

 

 

Some had done a lot of reading and searching on the internet for different theories about causes and the latest research evidence. 

 

 

People mentioned a wide variety of what they thought might be possible risk factors from their own experience, including:

 

  1. A stressful lifestyle or particularly stressful events
  2. Diet
  3. Exposure to chemicals (especially in agricultural work and on food, but also when working as a firefighter and installing industrial machinery)
  4. Exercise, sport and sports injuries
  5. Other injury (including head injuries and leg injuries)
  6. Previous chemotherapy and surgery
  7. Medication for depression
  8. Amalgam teeth fillings
  9. Throat infections, viruses
  10. Lyme disease
  11. Genetics
  12. Frequent travelling (including muscle cramps caused by sitting still for long periods).

 

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Some people thought there was evidence of a cluster of cases where they lived, including a woman who knew of three people with the condition using the same hairdresser. 

 

 

As several people commented, understanding the causes could help in finding a cure, and some were frustrated by what they saw as the lack of progress in research. 

 

 

The MND Association website provides a list of trial in progress and any results available so far. Information about how to get involved in research, including the MND Association DNA bank and national database can be found at on the MND Association's website.

 

Researchers from around the world are working to find the answers to what causes MND. Although there is still a great deal of work ahead to find out what environmental and lifestyle factors can trigger the disease, researchers have and continue to learn a lot about what can cause the disease on a cellular level. So far, researchers have identified that a faulty transport system of substances, clumping of faulty proteins in the neurone and many other factors may play a role in the development of the disease.
 

Learning more about the cellular causes of MND is essential to allow the development of treatments. More information on possible cellular causes can be found on the MND Association's website.

 

 

Familial or inherited MND

In 5-10% of cases MND runs in families; in about 20% of these families a particular gene carrying mutations has been identified, the SOD-1 gene (superoxide dismutase). Some people we talked to who had younger children worried especially about whether their MND might be an inherited form and some had been tested to check if they had an SOD-1 gene mutation.

The age at which symptoms first appear, type of onset and speed of progression can vary as much from person to person in familial MND as they can in sporadic MND. For some people, their own diagnosis may be the first time anyone has suspected a family connection, and it may not be immediately obvious if they have different symptoms. (See Interview 34 - Ken's story). A woman diagnosed in her thirties had known for some years she was at risk but assumed that if she did get MND it would be later in life, like her father and uncle. 

 

 

Knowing that MND runs in the family raises particular issues for people about whether they themselves will get the condition, and whether their children and other family members will also get the condition.

 

 

 

 

 

Last reviewed July 2010.

Last updated July 2010.

Jonathan Miller - Motor Neurone
How Healthtalkonline works, Alan and Elizabeth's story
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