Dystonia Association of Kentucky

What is Dystonia?
How can it affect you?

Overview and Symptoms
Dystonia is a neurological movement disorder causing severe, painful, involuntary muscle spasms.  This can cause twisting or jerking repetitive movements or abnormal and uncomfortable positions or postures.  Dystonia may affect any body part, any area of the body, half of the body, or the entire body.  In most people with dystonia, the cause is not known.  Several forms of dystonia, including one called DYT1, are due to a change in a gene.  These forms can be passed from parent to child.  Some cases of dystonia may be caused by exposure to toxins or poisons or to certain prescription medicines used to treat psychiatric disorders. 

For a list of these medications go to  http://www.dystoniaassociation.org/treatmentoptions.htm.

There are many forms of dystonia, including:

• Cervical dystonia (CD) or spasmodic Torticollis (ST) is the most common form of focal dystonia.  CD affects the muscles that control the movement of the head and neck, causing the person's head to turn to the side, or up or down.  Pain may accompany the movements.
• Limb dystonia affects the arm, hand, leg, or foot and includes writer's cramp, and involuntary posturing of the hand  that occurs only when writing.
• Spasmodic dysphonia (SD) or laryngeal dystonia affects the vocal cords and causes the voice to be either breathy or harsh and strangled.
• Oromandibular dystonia affects the mouth and tongue, and causes difficulty with speaking or swallowing.
• Blepharospasm affects muscles around the eyes causing eye closure and difficulty with vision.
• Childhood onset generalized dystonia is the most severe form.  Unlike the focal dystonias listed above, this form of dystonia begins in the leg at a young age and often spreads to affect the whole body.  Many cases are due to changes (mutations) in the DYT1 gene.

Because of the involuntary movements and sometimes associated pain, dystonia can interfere with work and daily activities of daily living.  Sometimes, the abnormal postures cause social embarrassment.  Dystonia is the third most common movement disorder following Parkinson and Tremor.  There are over 1,000,000 people affected in North America alone and one-third of those are children.

Diagnosis
Dystonia is not a common disorder and may be mistaken for other more common diseases.  In determining if you have dystonia, your physician will want to interview and examine you for:

• Your complete medical history, especially any exposure to legal or illegal drugs, or poisons.
• Your family history.
• Your general neurological condition, with particular attention to an assessment of dystonia, and the actions that make it better or worse.
• Your results from certain tests performed to rule out other conditions.  There is no definitive test for dystonia.