In dystonia, muscles contract involuntarily — causing an uncontrollable twisting of the affected body part. Symptoms can be mild or severe, and may interfere with the performance of many day-to-day tasks.
Doctors divide dystonia into two broad categories, generalized or focal. If your symptoms begin during your youth, you could have a type of dystonia that's inherited and the symptoms may eventually affect the entire body (generalized).
Most cases of dystonia, however, occur in adults and tend to affect only one body part — often the neck, the face or an arm (focal).
Medications can sometimes improve dystonia symptoms, but inconsistently. In some more-severe cases, surgery may be used to disable or regulate certain brain regions or nerves.
The impact of dystonia on a person's quality of life varies depending on the part of the body affected and the severity of contractions:
When to see a doctor
Doctors don't know exactly what causes most cases of dystonia, but a few factors may be involved.
Altered nerve cell communication
Depending on the type of dystonia, you may experience complications, such as:
All of these factors may lead to feelings of frustration, depression or anxiety.
Preparing for your appointment
You're likely to start by seeing your family doctor or a general practitioner. However, you may then be referred to a doctor who specializes in disorders of the nervous system (neurologist).
Here's some information to help you get ready for your appointment, and what to expect from your doctor.
What you can do
Preparing a list of questions can help you make the most of your time with your doctor. For dystonia, some basic questions to ask your doctor include:
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Tests and diagnosis
During your doctor's appointment you'll be asked to provide:
Your doctor may also request that you have a magnetic resonance imaging (MRI) scan done to look for tumors, lesions or evidence of a stroke.
Treatments and drugs
Dystonia treatment has improved in recent years, due to successes with botulinum toxin (Botox, Myobloc) injections. For more disabling cases, deep brain stimulation is now an option approved by the Food and Drug Administration.
Dystonia prescriptions that act on other neurotransmitters include:
Possible side effects from these medications include drowsiness, dry mouth, constipation, blurred vision and confusion.
Deep brain stimulation
Alternative treatments for dystonia haven't been well-studied, but some people find that these therapies are helpful, although not dramatically so.
Coping and support
Living with dystonia can be difficult and frustrating. You may not always be able to get your body to move the way you want it to, and at the same time you have to cope with people who don't understand your condition. You may find it helpful to talk to a therapist, or you might find it more beneficial to join a support group to talk to others who really understand what you're going through. In addition, people who are living with dystonia may be able to give you useful tips about daily living with dystonia. Ask your doctor if he or she knows if there are any support groups in your area. Or, call the Dystonia Medical Research Foundation at 800-377-DYST (800-377-3978) or visit its Web site to find a support group near you.
Last Updated: 2010-03-06
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