Signs and Symptoms of Dystonia
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Medically reviewed by Nicholas R. Metrus, MD
Dystonia is a neurological (brain and spine-related) movement disorder that causes your muscles to contract involuntarily, resulting in uncontrolled and repetitive body movements. This condition can affect one muscle or a group of muscles and causes symptoms like tremors in the neck, limbs, and torso and uncontrollable twisting of the body.
Symptoms of dystonia can vary significantly from person to person and often depend on when you start experiencing symptoms and how severe your symptoms are. Oftentimes, dystonia symptoms start mildly and worsen over time—especially if your symptoms develop in childhood.
Dystonia affects around 250,000 people in the United States. In some cases, dystonia is a result of a brain injury like a stroke. Other people get dystonia due to an inherited genetic mutation. In some other rare cases, dystonia appears sporadically without a specific cause. Knowing the signs of this condition may help you reach out for care sooner and get started on treatment.
Common Symptoms
Your dystonia symptoms may vary from someone else living with the condition. That's because your symptoms depend on the intensity of your condition and which muscle groups are affected. If you have dystonia, you may experience one or more of the following symptoms:
Muscle contractions that twist the body into unnatural positions
Tremors throughout the body
Spasms in the jaw and face
Uncontrollable mouth movements
Increased blinking and eye spasms
Twisting of the limbs, torso, arms, leg, and neck
Hand spasms that affect your writing
Abnormal posture of your legs and feet
Problems with gait (how you walk)
Changes in speech cadence or a strained voice
It is important to note that the involuntary symptoms of dystonia aren't usually painful by themselves. Pain associated with dystonia is rather a result of muscle fatigue and nerve irritation near the affected muscle groups. Dystonia can also cause your joints to deteriorate as they get worn down by the consistent movement.
Types of Dystonia
There are several types of dystonia—all of which affect different parts of your body and cause their own subset of symptoms.
Focal Dystonia
Focal dystonia occurs when only one single body part experiences involuntary movements. For example, if you have eye twitching, you won't experience tremors in the hands. This is the most common type of dystonia and it usually affects adults.
Segmental Dystonia
Segmental dystonia affects two or more body parts that are contiguous or close to each other. This type of dystonia causes symptoms in body parts that are related to each other. For example, you could experience multiple symptoms on your head at the same time like involuntary blinking and abnormal jaw movements.
Multifocal Dystonia
Multifocal dystonia affects two or more parts of the body that are not related to each other. For instance, a person with multifocal dystonia could experience eye spasms and involuntary arm movements at the same time. Or, you could have neck spasms while also experiencing an abnormal gait due to involuntary leg movements. In some cases, segmental and focal dystonia develop into multifocal dystonia.
Hemidystonia
Hemidystonia usually involves involuntary muscle movements on only one side of the body. If you have hemidystonia you could experience involuntary curling of the toes in your right foot with abnormal twisting of your right arm or shoulder. In this case, you wouldn't experience symptoms on the left side of your body.
Generalized Dystonia
Generalized dystonia affects the trunk of the body and two or more parts of the body. Generalized dystonia is rare. Focal dystonias are 10 times more likely to occur than generalized dystonia. Like with multifocal dystonia, symptoms of segmental and focal dystonia can get worse and develop into generalized dystonia.
If you have generalized dystonia you might, for example, experience muscle spasms in your back or shoulders that contribute to a poor posture. You might also have other symptoms like involuntary arm movements, wrist twisting, and a rigid neck.
Symptoms in Children
Dystonia can happen in children and symptoms can start any time between infancy (birth to 2 years old) to adolescence (13 to 20 years old). Dystonia symptoms that start during early childhood are more likely to progress and worsen as the child ages.
Childhood cases of dystonia are usually related to inherited genetic mutations. A genetic mutation in the DYT1 gene causes the majority of childhood dystonias. DYT1 is a gene that is highly expressed in areas of the brain that produce dopamine—a chemical messenger that controls body movement.
Symptoms by Sex
There are no specific differences between the types of symptoms people experience based on sex. However, there are differences in how prevalent (common) the condition is among people assigned male at birth compared to people assigned female at birth.
Dystonias are more likely to affect women than men. Additionally, symptoms of dystonia appear earlier in women than in men. Studies have shown that women start experiencing symptoms around 38 years old, while men on average develop symptoms at around age 44.
When to Contact a Healthcare Provider
Because symptoms of dystonia vary widely from person to person, this condition is often misdiagnosed. That said, it's important to reach out to your healthcare provider soon if you experience symptoms so that you're able to receive treatment and improve your quality of life.
Questions To Ask Your Provider
When you see your provider, it may help to prepare some questions that you can ask them to learn more about your condition. Consider the following:
Could my involuntary movements be due to another neurological condition?
What do you think caused my symptoms?
Which treatments are currently available to treat symptoms of dystonia?
Do you recommend any lifestyle changes that can minimize my spasms or tremors?
A Quick Review
Dystonia is a neurological movement disorder that causes abnormal muscle contractions and repetitive involuntary movements. Symptoms of dystonia vary widely from person to person, but you may experience spasms in the jaw and face, an abnormal gait, and uncontrollable arm twisting. Symptoms usually start mildly and worsen over time. If you have symptoms, it's important to seek support from a healthcare provider to start treatment and improve your quality of life.
Frequently Asked Questions
What is the life expectancy of a person with dystonia?
Research suggests that there isn't a significant difference in the life expectancy of people with dystonia and those without. However, dystonia may be associated with some serious situations. For example, some muscle spasms may affect your heart function or your ability to breathe. In such cases, medical treatment is necessary.
Does dystonia ever go away?
No, currently there is no cure for dystonia. But, there are multiple treatment strategies and medications that can help someone with dystonia manage their symptoms and improve their quality of life—such as Botox, physical therapy, and surgeries.
Can dystonia turn into Parkinson's disease?
No, dystonia does not turn into Parkinson's. The two diseases are very closely linked, however. Dystonia is a symptom of Parkinson's. Up to 30% of people with Parkinson's experience dystonia.
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