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Ask the Experts
What is dystonia?
Dystonia is a neurological movement disorder, where your muscles involuntarily co-contract against each other or spasm abnormally. This causes abnormal and often debilitating postures and repetitive movements. People with dystonia can find their body parts unusually contorted or twisted because of these muscle contractions.
Dystonia is the 3rd most common movement disorder, behind Parkinson’s disease and essential tremor . It can affect just one part of your body, but also can affect your entire body, with the muscle spasms being anywhere from mild to severe.
How will having dystonia affect me?
The muscle spasms you experience can be painful if severe, and can intervene in completing simple daily tasks, like sleeping, walking and eating. You will find it difficult to control your movements. Dystonia can be quite debilitating, and progressive since it has the ability to spread to various muscle groups in your body. Depression, social withdrawal and anxiety are also common in dystonia patients.
However, with the right support from your loved ones and doctors, it is possible to continue to lead a happy and healthy life.
What does having dystonia feel like?
If you have dystonia, you will probably experience one or more of your body parts being flexed or twisted into abnormal positions. You might also have repetitive body movements that are similar to tremors. Early symptoms include gradual loss of precision in using your muscles (e.g. if you keep dropping things or find your coordination in certain tasks is deteriorating), cramping pain when using muscles, and trembling.
Dystonia can also be task-specific, and might only become apparent during certain activities, like writing or hitting a golf ball. These could be activities that you’ve been doing for years, and they might become difficult to do all of a sudden, because of your muscles spasming. Your symptoms could worsen with stress and fatigue. Some examples of the body parts that might be affected by dystonia include:
- This is known as cervical dystonia, whereby muscle spasms in the neck cause your neck to twist and turn in certain manners, sometimes into painful positions.
Voice box (causing changes to your voice)
Jaw & tongue
- Causes speech issues and difficulty in eating.
- Dystonia in the eyelids can cause rapid and uncontrollable blinking, making it harder for you to see.
What are the causes of dystonia?
The cause of dystonia is not yet fully understood by doctors, but it is known that the development of this disorder is linked to a chemical imbalance in the basal ganglia. This is an area of the brain that controls your movement and muscle contractions, so when it is damaged, you can involuntarily move certain muscles.
Dystonia can begin in childhood or adulthood, and there is no single known genetic cause. If dystonia starts in childhood, the symptoms tend to spread across a few parts of the body, whereas if it only begins in adulthood, it tends to only affect one or two parts of the body. It can be inherited and caused by genetic mutations.
Dystonia can also be acquired, from certain medications, traumatic brain injuries or as a symptom of another neurological disorder. Examples of related neurological disorders which might have dystonia as a symptom include Parkinson’s disease, Tourette’s syndrome, brain tumours, neuroinfections like encephalitis, Huntington’s disease and Wilson’s disease.
If doctors cannot pinpoint the cause of your dystonia, it is known as idiopathic dystonia.
How is dystonia diagnosed?
To confirm a diagnosis of dystonia, your doctor might refer to your detailed medical history, family medical history, and analyse the symptoms you are experiencing. You may be referred to a neurologist to carry out further diagnostic tests. Blood tests and urine tests, as well as brain scans (CT/MRI scans) can be carried out to look for any issues, and help to rule out other conditions as causing your symptoms.
Electromyography (EMG) can be done, whereby electrical sensors are inserted into the affected muscles, and this provides a definitive diagnosis as it shows the nerve signals which are being transmitted to your muscles.
If you think you have dystonia, book an appointment with your doctor to run some tests and find out more about the treatment options available for you.
How is dystonia diagnosed?
Lifestyle changes. Treatment for dystonia begins with lifestyle changes that can help you to deal with and manage symptoms. You can do simple stretching exercises regularly to maintain your flexibility and reduce the pain your muscle spasms are causing. Massage therapy and occupational therapy, as well as physiotherapy has shown to improve symptoms in patients too, improving mobility and balance, and reducing stress and anxiety levels.
Medications. Medications might also be prescribed by your doctor, but these are usually tolerated better by children than adults, because they might have side effects like slowing down cognitive functions more in older people. Not all people respond well to the same medications, so you may need to discuss what’s suitable for you with your doctor.
Surgery. If the above do not prove to be effective, surgical methods may be considered. Leisional denervation of your affected muscle groups might provide relief, however this option will only be considered in extreme cases. In more recent years, deep brain stimulation (DBS) has been successful in helping patients with dystonia, but this is a newer surgery option that is a major surgery, and thus has some associated risks. In DBS, small electrodes are implanted into the brain which sends electricity into the region that causes the dystonic symptoms.
Living With Dystonia
Dystonia is a lifelong condition that currently has no cure. Although this condition might sound serious and diagnosis might seem scary at first, don’t worry, because it can be successfully managed with treatments, so that you can minimise the impact it has on your everyday life.
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- Dystonia. (2017, October 23). NHS. https://www.nhs.uk/conditions/dystonia/
- Dystonias: Overview, Classification, Common Types of Dystonias. (2020). EMedicine. https://emedicine.medscape.com/article/312648-overview#showall
- UAMS. (2018). What is Dystonia? [YouTube Video]. In YouTube. https://www.youtube.com/watch?v=D63ncKBQgD8
- UFHealth. (2012). What is Dystonia? [YouTube Video]. In YouTube. https://www.youtube.com/watch?v=pNOK1EkVGGM
- What is Dystonia? (2015). Dystonia Medical Research Foundation. https://dystonia-foundation.org/what-is-dystonia/