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Myoclonus Dystonia - a condition where myoclonus (jerking movements) and dystonia occur together

The following information is taken from our factsheet, Myoclonus dystonia.

Download the Myoclonus dystonia factsheet (PDF format)


Myoclonus dystonia

Myoclonus dystonia is a rare condition where myoclonus (sudden 'electric shock'-like jerks of the muscles) and dystonia occur in combination. This type of dystonia usually starts in childhood, and usually affects the neck, trunk and arms.

Like most types of dystonia, the condition can be very variable in severity, but after the initial development of the condition it does not usually spread any further.

It does not affect the mind or the senses, although some people with the condition do describe feeling anxious. The jerking movements and the dystonia may improve when alcohol is taken.

Myoclonus Dystonia can run in families, and a specific gene abnormality has been identified that causes the condition in about 25% of people. This gene test is a research test, and so testing is not generally available.

The condition can often skip generations, and is very variable in severity between people, even those within the same family.


How can myoclonus dystonia be treated?

Most people with myoclonus dystonia are treated with tablet medication. Treatment is not essential, however, and starting treatment depends on how severe the symptoms are. If people decide to take treatment, then usually a combination of drugs are used to treat the myoclonus and the dystonia.

Although these drugs can be very helpful, they are not effective in everyone, and can cause side effects.

Botulinum toxin injections can also be used to treat the dystonia, particularly if it affects the neck. These injections can sometimes also reduce the severity of the myoclonus too.

Botulinum toxin injections temporarily weaken the muscles they are injected into. Injections have to be repeated every three months or so.

These injections can be a very successful treatment, and side effects are generally mild and rare. For more information on this treatment please see our separate page on Botulinum toxin treatment.


How do I live with myoclonus dystonia?

Myoclonus dystonia can be a challenging condition to live with. Most people find that the symptoms can be made worse by anxiety, and therefore can find social situations quite difficult. Because the condition can be a genetic one, many people find it helpful to speak to a genetic counsellor about the genetic issues and to understand what implications the condition may have for one's family.
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