Prognosis

My dystonia symptoms have been stable for five years. Should I expect them to remain the same, or will they progress and become more debilitating?
After a window period of about three to five years after symptoms begin, dystonia will often stabilize and not progress to other body areas. However, dystonia symptoms are somewhat notorious for changing subtly over time and varying in intensity depending on a number of factors (for example, fatigue, stress level, menstruation).

As a general rule, the older a person is when dystonia develops, the less likely it will progress to multiple body areas. The younger a person is when dystonia develops, the more likely that it will progress to multiple body parts over time, particularly if the dystonia begins in a leg. In those patients, the disorder will typically stabilize within a few years and not progress any further. Children who first develop dystonia in the neck or arm may experience little, if any, progression beyond those areas, and kids who develop paroxysmal dystonia or dyskinesias may have symptoms that plateau in mid-childhood, worsen during puberty, and improve significantly in adulthood.

In some dystonia patients, especially those with cervical dystonia, there may be a temporary remission that lasts months or years.

The bottom line, unfortunately, is that dystonia is unpredictable. There is no guarantee that the disease will not progress even after a period of stabilization, and no way to predict how symptoms may change over time. However, experienced physicians will be aware that symptoms may change subtly over time, and there are a variety of treatment options that can be used to adjust the treatment plan.

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. 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.

What are the chances of a child with generalized dystonia affecting mainly the feet and legs developing other types of dystonia, like cervical dystonia?
When dystonia begins in childhood involving the legs and the feet, it is quite common for it to progress to involve the trunk, the arms, and even the neck. This is particularly true for early-onset generalized dystonia. Children who first develop symptoms in the arm or neck typically do not experience widespread progression to other areas. Early identification of symptoms and prompt treatment can often minimize the impact of dystonia on a child’s mobility and quality of life.

After years of having dystonia, is the skeletal system affected in any way?
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.

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