The Dystonia Society

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Myoclonus Dystonia

Myoclonus is an involuntary 'electric-shock' jerking of a muscle or a group of muscles. Where such jerking occurs in combination with a dystonia this is called myoclonus dystonia.

Myoclonus dystonia is a genetic and rare form of dystonia which has genetic origins whose symptoms include rapid jerking movements (myoclonus) in combination with muscle contractions.

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MyoclonusThis type of dystonia usually begins in childhood, and tends to affect the neck, trunk, and arms. As with most dystonias, severity may vary, but after the initial onset and development, it does not usually spread any further. Dystonia does not affect the mind or senses, though some people report feeling anxiety. The jerking movements and dystonia may improve when alcohol is ingested.

Myoclonus dystonia can run in families, and a specific gene abnormality has been identified which causes the condition in approximately 25% of individuals. As this gene test is a research test, it is not generally available. The condition may often skip generations, and is variable in its severity, even between members of the same family.

Most people with myoclonus dystonia are treated with tablet medication. Treatment is not essential, however, and beginning treatment depends on the severity of symptoms. If individuals decide to proceed with treatment, the regime usually involves a combination of drugs to treat both the myoclonus and the dystonia. Although these can be very helpful, they are not universally effective, and some patients experience side effects.

Botulinum toxin injections can be used to treat the dystonia, particularly if it affects the neck. These treatments may sometimes reduce the severity of the myoclonus as well. The injected botulinum toxin temporarily weakens the muscles at the site of the injection, and are usually repeated every three months or so. Many patients find these to be a successful treatment, with generally rare and mild side effects.

Most find that myoclonus dystonia symptoms may be made worse by stress and anxiety, and may find social situations quite difficult. As the condition can be genetic, many find it helpful to speak to a genetic counsellor about the genetic issues and possible implications the condition may have within one's family.

The Dystonia Society is committed to ensuring that everyone with dystonia has access to the treatments they need, which includes raising awareness about dystonia in all its various forms. The Society is a good source of support and information for those who suffer from dystonia and their friends and families. We offer helpline services and regional support groups, a website full of information and resources (including an active forum,) and support research into treatment and practical methods of coping.

For more information, call our helpline on 0845 458 6322


Last reviewed January 2013

Disclaimer The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor. The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.

 

 

 

 

 

 

 

 

 

 

 

 

To read case studies of individuals with myoclonus dystonia that have been featured in Dystoniamatters! click on the links below:

Julian Parker

Andrew Russell

 

Last reviewed October 2011

Disclaimer
The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.