How do I know if I have dystonia?
The type of doctor with the training and expertise to diagnose and treat dystonia is a movement disorder specialist—a neurologist with special training in movement disorders. Dystonia is a clinical diagnosis, which means the physician must observe and recognize the physical symptoms and rule out other possibilities. Testing may include blood and urine analysis, and brain scans. There is no single test to definitively diagnose dystonia. There are several genes that cause or are associated with dystonia and your doctor may order genetic tests.
To find your local movement disorder clinic, click here and select the location closest to you.
Can dystonia occur overnight? Are there warning signs?
Dystonia generally develops gradually. Exceptions include rapid-onset dystonia-parkinsonism (which may develop over days or hours) and the acute dystonic reactions associated with certain antipsychotic drugs.
What is a dystonic storm?
Rarely, patients with dystonic symptoms develop increasingly frequent and intense episodes of severe generalized dystonia called status dystonicus. A single episode of this severe dystonia may be referred to as a dystonic storm or dystonic attack.
Although the exact numbers are not known, anecdotal accounts suggest that relatively mild to moderate dystonic storms are a fairly regular experience for some individuals with generalized dystonia, especially secondary dystonias. Most cases of severe status dystonicus occur in persons who have generalized dystonia that is complicated by other conditions such as metabolic disease, secondary effects of a traumatic injury, or additional neurological conditions.
If a person s swallowing or breathing is affected by a dystonic storm, he/she may require emergency medical attention. In very severe cases, individuals may be admitted to an intensive care unit setting where they may be sedated with medication or need temporary mechanical ventilation to support breathing.
Although the exact origins of status dystonicus are not known, some documented cases appear to be triggered by an abrupt change in medication or severe infections. Medications and botulinum neurotoxin may be used to reduce or alleviate symptoms of a severe dystonic storm. Individuals experiencing a relatively mild or moderate dystonic storm may have a specific medication prescribed by a physician to take at the onset of the attack, may get some relief from a sensory trick, or may simply wait for the symptoms to subside.
What can I ask my doctor to ensure I get the best care?
There are several questions you will likely have upon being diagnosed with dystonia. Remember to have questions ready before visiting your doctor. Come with pen and paper (or a voice recorder if writing is difficult) so you can take notes and record answers. The following are common questions:
- What type of dystonia do I have?
- What can you tell me about what may have caused the dystonia?
- How will my daily life be impacted by my dystonia?
- Will my symptoms worsen?
- Can I pass dystonia on to my children?
- Will I develop other illnesses as a result of dystonia?
- How can I explain dystonia to my family, friends, and employer?
- Is there anyone my family or employer can talk to about this?
- How can I help raise awareness of dystonia?
- Are there any groups or associations I can join for people who are coping with dystonia?
Is dystonia life-threatening?
For the overwhelming majority, dystonia does not shorten life expectancy and is not fatal. In severe generalized dystonia that affects many body areas, problems can arise that are secondary to the dystonia and require emergency care. These circumstances can be life-threatening if not treated, for example, if breathing or heart function is compromised. However, these instances are quite rare and usually treatable. Dystonia does occur as a symptom of many degenerative diseases, some of which do impact mortality, but the dystonia itself does not shorten the life span.
Is tremor a symptom of dystonia?
Tremor is frequently, but not always, seen with dystonia. Differentiating between the two can be difficult in some individuals with dystonia. Tremor is an involuntary, rhythmic muscle contraction leading to shaking movements in one or more parts of the body, and dystonia is characterized by excessive muscle contractions causing abnormal, often repetitive, muscle movements and/or postures. Dystonic movements can be patterned and twisting and may resemble tremors. Individuals with cervical dystonia may have a head or hand tremor. Individuals with focal hand dystonia may have an associated writing tremor of the hand. Researchers continue to examine the relationship between tremor and dystonia.
Is TMJ a form of dystonia?
Temporomandibular joint (TMJ) disease is an arthritic condition, not dystonia. Oromandibular dystonia may be misdiagnosed as TMJ.
Will I have this forever, or will it go away? Is there a cure?
Unfortunately, there is not yet a cure for dystonia. However, there are a number of treatments.
Are treatments covered?
This is a difficult question to answer, as coverage is dependant upon the type of dystonia you have, and the type of treatment you need. We recommend you consult with your doctor, and refer to our financial support section available at our financial support page.
Does dystonia travel throughout the body? Can it affect my heart, diaphragm, or other organs?
Dystonia affects muscles that can be controlled voluntarily mostly the skeletal muscles. Dystonia does not affect smooth muscles, such as the heart. However, dystonia can affect breathing in several ways. Severe neck dystonia can cause difficulty breathing when the upper airway is impacted. Dystonia involving the vocal cords can potentially cause shortness of breath when the vocal cords close tight, but in general the tightness is present primarily when speaking. The act of breathing involves muscles between the ribs and a large muscle called the diaphragm. Dystonia can cause stiffness in the muscles between the ribs and can cause a sensation or shortness of breath. Occasionally, the diaphragm can also be affected. Finally, when a person with dystonia has involvement of the spine, twisting of the torso can limit how much the lungs can expand when breathing, and this can potentially cause shortness of breath.
The bladder is made up of smooth muscle, and therefore not affected by dystonia. However, the muscles around the opening of the bladder (the external sphincter) can very rarely become involved, resulting in difficulty of passing urine. This seems to occur most often dystonia that is a symptom of another neurological disease such as Parkinson's disease.
How do I explain dystonia to someone else?
Dystonia can be a very difficult thing to explain to others, but it is very important. Having the support of loved ones is a critical part of living well with dystonia. Providing your family and friends with the resources included in this package may help them understand what dystonia is and how it can be treated. Talking about dystonia is an inherently personal choice, and one only you can make for yourself.
How do I find a doctor who specializes in Dystonia?
The DMRF Canada recommends that individuals with dystonia speak to a movement disorder neurologist about their specific needs. If you are looking for an appropriate contact, please contact us as we can help you to find someone in your area. You can also visit our support page to find an appropriate professional in your area.
Click here for tips on finding a doctor
What is a Physical Medicine & Rehabilitation Physician?
Physical Medicine & Rehabilitation (PM&R) physicians evaluate and treat patients with physical and cognitive impairments resulting from musculoskeletal conditions (neck or back pain, or injury) neurological conditions (stroke, brain injury, or spinal cord injury), and other medical conditions.
Click here to read more
What is a Movement Disorder Specialist?
There A movement disorder specialist is a neurologist with intensive training and experience specifically in movement disorders.
Click here to learn more and how to locate a movement disorder specialist.
Is there support out there for me and my family?
There are various resources available to dystonia patients. One of the most enriching supports offered are support groups, provided by the DMRF Canada – this allows patients to get together, share their stories, build some personal networks and gain confidence knowing that they are not alone through this journey. Contact the DMRF Canada to find out about the supports that are available in your community.
Is there a correlation between dystonia and fatigue?
The constant movement and muscle contractions of dystonia can be compared to working out virtually all day and for people whose symptoms don't stop during sleep, 24 hours a day. This can definitely result in fatigue and diminished stamina. Fatigue may be confused with lack of energy or motivation which may be a sign of depression or other medical conditions. Adequate rest and supplementing sleep with restorative practices such as meditation or relaxation techniques are a mainstay of coping with fatigue for many people.
Can dystonia go into remission?
Remission happens only rarely, as it usually temporary. It was once believed that 10% of people with dystonia might have such a spontaneous remission. It is probably much less than that. More frequently, instead of a true remission, the severity of dystonic postures may be reduced for months or years in a small minority of patients. Nearly everyone has some degree of day-to-day fluctuation in the severity of his or her symptoms For a few, the fluctuation may be so much better and for such a long time that it seems like a remission. However, a careful exam will still reveal some involuntary postures. Those who do seem to have a true remission are likely to again have symptomatic dystonia sometime later.
Does dystonia affect bones?
Dystonia does not have a primary effect on bones, but because of the abnormal postures that result from dystonic spasms, unusual mechanical stress may be placed on bones. For instance, if someone has a severe dystonia that involves a very sustained posture in one position, he/she may get a shortening of the ligaments and tendons so that the joint becomes "contracted" and can no longer move freely through a full range of motion. With time, this might be expected to cause excessive wear on the affected bones. Even short of a contracture, some bones may experience excessive wear because of such abnormal mechanical stresses. Bone changes, however, are not usually symptomatically important to people with dystonia. It is more often the case that we are concerned about dystonia's effect on muscles and related supportive tissues as they influence posture.
Can medications used to treat dystonia be used during pregnancy?
There have been very few studies on the effects of dystonia medications and botulinum neurotoxin injections in pregnant women, so to err on the side of caution, it is generally recommended that women who are pregnant cease drug treatment. In some cases a woman may (gradually) stop taking oral drugs completely, in other cases the dose is reduced. Treatment for dystonia during pregnancy is very individual and each woman's situation is unique. There is no single recommendation for all women patients, and women should discuss their situation with an experienced movement disorder specialist.
Are chiropractor adjustments on the neck and upper back useful for cervical dystonia?
People with dystonia should exercise extreme caution in considering traditional chiropractic care to address their dystonia symptoms. Because of the nature of chiropractic adjustments and the nature of dystonia, there is some clear potential for harm. Gentle massage may help temporarily alleviate muscle tension, but before seeking treatment from a chiropractor or massage therapist (or any complementary therapy practitioner) you must be completely confident that the practitioner fully understands dystonia and the implications of your individual symptoms. This may involve providing materials to the practitioner, sharing the DMRF Canada’s web address, or inviting the practitioner to contact your movement disorder specialist.
Has acupuncture been used in dystonia?
Although published information is limited, anecdotal accounts suggest that acupuncture may help relieve pain in people with dystonia. The benefits of acupuncture are usually cumulative and require more than one visit to the practitioner before becoming apparent. Acupuncture can be used in conjunction with traditional medications without negative interactions.
If you are interested in finding an acupuncture practitioner, learn as much as you can about the practice and check into the required credentials for people who practice acupuncture in your area.
Can hypnosis help relieve symptoms?
Hypnosis does not address dystonia directly, but regular relaxation techniques such as self-hypnosis can improve well being and quality of life.
Do specific foods or vitamins affect dystonia? Should people with dystonia avoid certain foods?
There is no known correlation between dystonia and diet. Generally speaking, individuals with dystonia should have a nutritious diet sufficient in calories, considering the amount of muscle activity experienced throughout the day. Stimulants such as nicotine and caffeine may make symptoms worse. Alcohol may make symptoms temporarily better (or worse) in some cases. Nutritional supplements and vitamins have not generally been shown to cause dramatic improvement in movement disorders. Substances that make a person more relaxed, calm, or sleepy may non-specifically improve symptoms. It is important for individuals to discuss any vitamins and supplements taken with their movement disorders specialist to guard against potential interactions or safety concerns. Certain foods can interfere with the absorption of specific medications.
Questions about using cannabis to help manage symptoms?
Click here to read about a survey conducted by DMRF (USA) on the use of cannabis.
Our thanks to the Dystonia Medical Research Foundation for providing information online via: https://www.dystonia-foundation.org/