Dystonia: Frequently Asked Questions
What is dystonia?
Dystonia is a neurological movement disorder characterised by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures.
Source: www.dystonia.ie
Dystonia is the term used to describe an illness dominated by involuntary spasms and muscle contractions that induce abnormal movements and postures. Such dystonic spasms may affect one part of the body, such as the eyes, neck or a limb; a larger region, such as the neck and arms; or the whole body. The Dystonias: Fact Sheet
Source: www.cpparent.org
Is there are cure for dystonia?
At this time there is no cure for dystonia, but treatments are available. Research continues to better understand the cause of dystonia.
Source: www.dystonia.ie
Is dystonia fatal?
In the overwhelming majority of people with dystonia, it does not shorten life expectancy or result in death. In very severe generalized dystonia that affects many body areas, there can be problems that arise secondary to the dystonia that may cause life-threatening conditions. However, these instances are quite rare and usually treatable. Dystonia does occur as a symptom of many degenerative disease, some of which do impact mortality, but the dystonia itself does not shorten life span.
Source: www.dystonia-foundation.org
Who gets dystonia?
Dystonia does not discriminate. Anyone, regardless of race, age, or ethnicity, can manifest symptoms of dystonia.
Source: www.dystonia.ie
Is dystonia a genetic disorder?
Yes and no. At present researchers have recognised multiple forms of inheritable dystonia and have identified at least thirteen genes or chromosomal locations responsible for the various manifestations. Also, certain forms of dystonia are secondary resulting from an apparent outside factors and attributed to a specific cause such as exposure to certain medications, trauma, toxins, infections, or stroke.
Source: www.dystonia.ie
What causes dystonia?
At this time it is unknown what exactly causes dystonia. Researchers believe dystonia is due to abnormal functioning of the basal ganglia, which are deep brain structures involved with the control of movement. The basal ganglia assist in initiating and regulating movement.
Source: www.dystonia.ie
Dystonia is a movement disorder, which need not involve any other functions of the brain. Thus intellect, personality, memory, emotions, sight, hearing, sensation and sexual function are quite normal in patients with primary dystonia. We believe that the symptoms of dystonia are due to malfunction of a small area of the brain known as the basal ganglia which controls certain aspects of movement. ...
Source: www.dystonia.co.uk
It is thought that the symptoms of dystonia are due to malfunction of a small area of the brain known as the basal ganglia which controls certain aspects of movement. In most cases, no physical cause can be identified, and in the few cases of idiopathic dystonia where the brain has been examined under the microscope no anatomical abnormalities can be seen. Some people may develop dystonia secondary to other underlying medical conditions. ...
Source: www.dystonia.org.uk
How is dystonia treated?
The approach for treatment of dystonia may be three-tiered: oral medications, botulinum toxin injections, and surgery. These therapies may be used in alone or in combination.
Source: www.dystonia.ie
Does DBS cure dystonia?
There is no cure for dystonia at this time. DBS treats the symptoms of dystonia. Next: Getting DBS Therapy Information on this site should not be used as a substitute for talking with your doctor. Always talk with your doctor about diagnosis and treatment information. Last updated: 29 Dec 2008
Source: www.medtronic.com.au
How is dystonia diagnosed?
Although dystonia affects over 40,000 people in the UK, your GP may not have seen it before: or, if he/she has another patient with dystonia, your symptoms may be very different. In addition the movements and postures may be influenced by stress and emotions. There is no single diagnostic test that can confirm dystonia, and the diagnosis is made predominantly on its clinical presentation – that is, what it looks like, feels like, and how the symptoms have developed over time. ...
Source: www.dystonia.org.uk
What part of body does dystonia affect?
Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords. Although there are different names to describe the various forms of dystonia, usually based on the affected body or cause of dystonia, all types fall under the general heading of “dystonia.”
Source: www.dystonia.ie
Can you die from dystonia?
No, dystonia does not shorten life expectancy or result in death. In rare cases complications may arise secondary to dystonia which can cause serious medical problems, however this is rare.
Source: www.dystonia.ie
How many people in Ireland are affected by dystonia?
It is the third most common movement disorder after Parkinson’s disease and Tremor, affecting an estimated 3,000 people in Ireland.
Source: www.dystonia.ie
Are medications used to treat dystonia?
Yes, several possible categories of medications used in the treatment of dystonia include anticholinergics, benzodiazepines, baclofen, and dopaminergic.
Source: www.dystonia.ie
Is there a correlation between dystonia and fatigue?
The constant movement and muscle contractions of dystonia can be compared to working out approximately 18 hours a 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. ...
Source: www.dystonia-foundation.org
Can children have surgery for dystonia?
The most severe form of generalized dystonia often begins in childhood and may become severe by early teen years. These patients may be excellent candidates for surgery. We have implanted DBS devices in patients as young as five years old. For children under 16, the surgery is usually performed under general anesthesia, with no awake testing.
Source: neurosurgery.ucsf.edu
Can dystonia go into remission and reappear?
Yes, but remission happens only rarely. 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. ...
Source: www.dystonia-foundation.org
What type of brain surgery is best for dystonia?
While this field is rapidly evolving, evidence is starting to accumulate that the best brain region for surgery for dystonia is the globus pallidus. This is a peanut-sized structure deep in the brain whose electrical activity is abnormal in dystonia. While the older lesioning technique and the newer DBS technique can both be effective, we usually prefer DBS over lesioning because it is reversible and adjustable, and does not permanently destroy any part of the brain. ...
Source: neurosurgery.medschool.ucsf.edu
What is Cervical Dystonia?
Cervical Dystonia is a type of Dystonia characterized by involuntary, constant muscle contractions that cause twisting, abnormal postures, and pain in your neck and shoulders.
Source: secure1.acuriantrials.com
Is spasmodic dysphonia a form of dystonia?
Yes, spasmodic dysphonia is a focal form of dystonia. Dystonia is the general neurological term for a variety of problems characterized by excessive contraction of muscles with associated abnormal movements and postures. Other focal dystonias include blepharospasm (involving the eyelids), oromandibular dystonia, (involving the jaw and tongue), cervical dystonia or spasmodic torticollis (involving the neck), and writer's cramp (involving the hand). These forms of dystonia may appear in combination with spasmodic dysphonia.
Source: www.dysphonia.org
CAN DRUGS HELP DYSTONIA?
If the problem is mild, it may be best to avoid drug treatment. Drugs need to be taken continuously for long periods of time, and all drugs can cause unwanted side-effects. No drugs can cure dystonia yet. However, if your dystonia is causing unacceptable disability, then drug treatment may be recommended to try to control the muscle spasms. Unfortunately drug treatment is scarcely ever 100% effective, and many patients do not get great relief. Another problem is that no one drug is best for all patients with dystonia. ...
Source: www.dystonia.co.uk
If the problem is mild, it may be best to avoid drug treatment. Drugs need to be taken continously for long periods of time, and all drugs can cause unwanted side-effects. No drugs can cure dystonia yet. However, if your dystonia is causing unacceptable disability, then drug treatment may be recommended to try to control the muscle spasms. Unfortunately drug treatment is scarcely 100% effective, and many patients do not get great relief. Another problem is that no one drug is best for all patients with dystonia. ...
Source: www.dystonia.org.uk
CAN DYSTONIA GET BETTER?
There is a small chance of dystonia improving or disappearing spontaneously, with something like 10 - 15% of patients experiencing temporary (or occasionally even permanent) "remission". Why this happens, to whom it will happen, or when it will happen cannot yet be predicted. This is of great importance, for it shows that the brain in dystonia may not be damaged permanently. THE DIAGNOSIS OF DYSTONIA Dystonia is a fairly rare condition, which your GP may not have seen before. ...
Source: www.dystonia.co.uk
There is a small chance of dystonia improving or disappearing spontaneously, with something like 10 - 15% of patients experiencing temporary (or occasionally even permanent) “remission”. Why this happens, to whom it will happen, or when it will happen cannot be predicted.
Source: www.dystonia.org.uk
What are the other types of heritable dystonia?
There are other types of heritable dystonia, each of which is distinguished by the gene responsible for the disorder. For example, the gene for dopa-responsive dystonia (DRD) has been identified and well characterized. The gene locations for several other dystonias have also been determined, including that for X-linked parkinsonism on the X chromosome. Another disease gene located on chromosome 8 codes for a type of dystonia observed predominantly in the Amish and Mennonite populations. ...
Source: www.wemove.org
What age does dystonia start?
In most cases, dystonia begins in adult life, and is more likely to first appear in those over 40, and increasing with age. In the vast majority of these cases, the dystonia remains ‘focal’ (affecting one muscle group), or occasionally spreads to an adjacent muscle group. A small proportion of cases of dystonia begin in childhood or adolescence. There are estimated to be around 2,000 children (under age 16) with dystonia, either 'primary' dystonia, or secondary to another condition. ...
Source: www.dystonia.org.uk
How do I find support in dealing with dystonia?
Dystonia Ireland provides a support system including a helpline – (01) 492 2514 and a support group in Dublin. In addition various on-line resources are available including bulletin boards and chat rooms.
Source: www.dystonia.ie
Can dystonia cause difficulty swallowing or breathing?
Yes, sometimes. This depends primarily on the part(s) of the body affected. For instance, some people with dystonia involving the jaw or tongue may have chewing or swallowing difficulty. Occasionally, people with very severe cervical dystonia also may have some swallowing difficulty. Treatments, whether medications or botulinum toxin injections, can also potentially have swallowing side effects. Dystonia rarely affects breathing. ...
Source: www.dystonia-foundation.org
