Dystonia 

Introduction 

Dystonia often affects the neck muscles, which is known as cervical dystonia 

Who is affected by dystonia?

Dystonia is generally uncommon, although it's one of the more common neurological conditions.

Dystonia can affect men, women and children. It can be difficult to diagnose, and there may be many people with the condition who remain undiagnosed.

The Dystonia Society estimates that at least 70,000 people are affected by dystonia in the UK. At least 8,000 of these are children and young people.

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Dystonia is a medical term that describes a range of movement disorders that cause muscle spasms and contractions.

The spasms and contractions may either be sustained or may come and go.

Movements are often repetitive and cause unusual, awkward and sometimes painful postures. Tremor (shaking) can also be a characteristic of some types of dystonia.

Dystonia is thought to be a neurological condition (caused by underlying problems with the brain and nervous system). However, in most cases brain functions such as intelligence, memory and language remain unaffected.

Types of dystonia

Dystonia can affect only one muscle or a group of muscles. There are five main types of dystonia. They are:

  • Focal dystonia - where a single region, such as the hand or eyes, is affected. Cervical dystonia, blepharospasm (abnormal twitch of the eyelid), laryngeal dystonia and writer's cramp are all examples of focal dystonia. 
  • Segmental dystonia - where two or more connected regions of the body are affected. Cranial dystonia (blepharospasm affecting the lower face and jaw or tongue) is an example. 
  • Multifocal dystonia - where two or more regions of the body that aren't connected to each other, such as the left arm and left leg, are affected. 
  • Generalised dystonia - where the trunk and at least two other parts of the body are affected. The legs may or may not be affected. 
  • Hemidystonia - where one entire side of the body is affected. 

About 90% of all cases are either cervical dystonia (which affects the neck muscles) or blepharospasm (which affects the eyelids). These are both focal dystonias that tend to develop later in life. They don’t usually get any worse and no other muscles are affected.

Read more about the symptoms of dystonia.

Causes of dystonia

Exactly how dystonia develops remains uncertain, but it's thought to be caused by a problem with the part of the brain that controls muscle movement (the basal ganglia).

If there's no identifiable cause of dystonia, or if the cause is genetic, it's described as primary dystonia.

Secondary dystonia is where dystonia occurs as a symptom of an underlying condition or injury. Common causes include stroke, brain injury, encephalitis (infection of the brain) and Parkinson’s disease.

Read more about the causes of dystonia.

Diagnosing dystonia

Diagnosing dystonia is a complicated process that involves identifying the precise nature and specific features of a person’s movement disorders, and then seeing which type of dystonia classification they fit into.

When diagnosing dystonia, it's important to confirm whether you have primary or secondary dystonia because this will determine the type of treatment you need.

If you have typical signs of late-onset focal dystonia, specific investigations may not be required. However, tests may be needed to confirm whether you have primary or secondary dystonia. These may include brain scans, urine or blood tests and genetic testing.

Read more about how dystonia is diagnosed.

Treating dystonia

There's no cure for dystonia, but the condition can usually be effectively managed. 

Treatment will vary depending on the type of dystonia you have and the precise nature of your symptoms. However, the four main types of treatment are:

  • botulinum toxin - widely used to treat neurological conditions that involve abnormal muscle contractions, such as dystonia; it's injected into the affected muscles to temporarily weaken them and reduce spasms
  • medication - such as anticholinergics, Baclofen and muscle relaxants
  • physiotherapy - where exercises are used to improve range of motion and posture and prevent muscle weakness
  • surgery - if other treatments are unsuccessful, the nerve endings that are causing spasms can be cut (selective peripheral denervation), or electrodes can be implanted within the brain which are connected to a small device that's similar to a pacemaker (deep brain stimulation)

Read more about how dystonia is treated.

Outlook

Dystonia is an unpredictable condition. It tends to progress slowly and the severity of a person's symptoms can vary from one day to another.

Focal dystonia usually progresses gradually over a period of about five years and then doesn't get any worse.

Sometimes, a person's symptoms will improve or disappear completely. This is known as total remission and it's thought to occur in around 5-10% of people.

Total remission is more likely in cases of secondary dystonia, such as dystonia that occurs after a stroke. If someone has another underlying condition, such as Parkinson’s disease, the symptoms of dystonia are more likely to last for the rest of their lives.

Page last reviewed: 19/06/2013

Next review due: 19/06/2015

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The 3 comments posted are personal views. Any information they give has not been checked and may not be accurate.

morbitz1 said on 29 March 2014

My problem started when I was about 2 months pregnant age of 27 year old. My right hand and leg muscles started to be stiff and my right hand shakes a lots. My beginning of pregnancy was OK, just this thing make me feel very exhausted. Even I experienced difficulties to walk. So, I went to see Specialist Neurologist in Norwich. After some blood tests and MRI, doctor confirmed that I got Hemi Dystonia. Now, I got 1 year old daughter, she is doing OK, very happy baby. And my Dystonia, well some days are good and some bad. When I do have bad days, my hand shakes and feel stiff. I do have tables called: Clonazepam (take them when I need to).

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Brummy40 said on 20 August 2013

My father had a severe case of Dystonia, it affected every muscle in his body. He contracted the disease when I was a child and lived on through for 27 years with it. He got worse as the years went on and could less and less and finally had to go to hospital to have a tube fitted as he could no longer eat properly, this was to be the end as he contracted MRSA when I hospital. This. Disease can be hard to cope with and not pleasant from my experience with it, we never met other sufferers and knew very little growing up. My father became ill in 1974 and passed away in 2001. I grew not knowing my father being healthy or able to talk but loved him all the same. He had a great sense of humour and was as strong as an ox considering his muscles didn't do what they were told. I hope they never find another case as bad as dads and that they find a cure or something to help from my dad. I still miss him and wish I had spent more time with him when I was younger. Love you Dad xx

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pauline15 said on 19 October 2010

My son, who had tb meningitis approximately 40 years ago as a young child, has, only this year had part of his resulting multiple disabilities,diagnosed as secondary dystonia. It affects his left arm and leg. Neither I, nor anyone else I know even heard of Dystonia until this year despite many years of trying to find some way of obtainig help for the embarrasing and painful effects of the condition. I wonder how many other sufferers and families have to carry on in ignorance of the existence of this debilitating condition. This may well account for the relatively low numbers of known dystonia patients.

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