Dystonia Clinic

Overview

To request an appointment with our clinic, please call 617-726-3642. Our unit coordinator will ask you for general and medical history information and try to schedule an appointment with the physician who best fits your needs.

Before your appointment, you will receive a medical history form to fill out and return by mail. This form collects further details about your health history and current medications.

You and your physician will review this information at your first visit. You will also undergo a physical examination in which the physician may ask you to perform tasks such as toe tapping, writing and walking. Our physicians are quite experienced in identifying dystonia, which can be notoriously difficult to diagnose.

When the evaluation is complete, you and the physician discuss recommendations and agree on a suitable treatment regimen based on your current symptoms. We customize each patient's treatment plan—and make adjustments over time as necessary—to optimize symptom management.

Multidisciplinary Teamwork

The Dystonia Clinic takes a team approach to patient care. Our neurologists regularly collaborate in diagnosing, evaluating and treating patients with dystonia. If we suspect a patient has a different neurologic disease, we can refer him or her to a subspecialist elsewhere within the Department of Neurology for further assessment.

In order to address all aspects of the patient's well-being, we may call on colleagues throughout Massachusetts General Hospital, including physical therapists, speech therapists, social workers and psychologists. We strive to develop a long-term treatment solution that allows the patient to control this disorder and lead an independent, active life. Many of our patients are able to continue working until a normal retirement age.

Genetic Counseling

Genetics can play a strong role in children who develop dystonia and may also be a significant risk factor for adults. When appropriate, we refer patients for genetic counseling to determine if a genetic mutation that causes dystonia is present.

About This Program

Our team has highly specialized experience in caring for patients with cervical dystonia, generalized dystonia, writer's cramp and other forms of dystonia.  Dr. Sharma, clinic director, is a member of the Mass General Department of Neurology. An adult neurologist, she also works closely with the Mass General for Children in evaluating and treating our pediatric patients. Our staff also includes Trisha Multhaupt-Buell, MS, a genetic counselor and research coordinator.

A Full Range of Therapies for Dystonia

Dystonia can affect any part of the body, such as limbs, hands, the torso, eyelids, face, neck and/or vocal cords. This chronic condition has no cure, so we focus on symptom management to improve the patient's quality of life and ability to function.

Because each patient has a unique set of symptoms, we develop individualized treatment plans. Patients may respond to oral medications, botulinum toxin injections, braces, physical therapy or a combination of these treatments. We preach patience because finding the most effective treatment regimen for the patient can sometimes take months.

If oral and/or injected medications don't achieve the desired results, the patient may benefit from deep brain stimulation (DBS). This surgical procedure, which involves implanting an electrode (i.e. stimulator) in the brain to interrupt neural activity, can alleviate symptoms in carefully selected patients with severe dystonia.

Mass General was one of the first hospitals to perform DBS and has used the procedure extensively to treat movement disorders such as dystonia and Parkinson's disease.

Committed to Treatment & Research

The Dystonia Clinic is an integral part of the Mass General Movement Disorders Division. Although our clinic's primary mission is to treat patients, we also lead robust research efforts into dystonia and other movement disorders.

In 1997 Mass General researchers identified and cloned the gene responsible for early-onset dystonia, a discovery that has led to a better understanding of the disease and possible preventative treatments. Today, Dr. Sharma is aiming to find other genes that cause dystonia and using functional MRIs to explore how the brain works in people with this condition.

Our patients may be eligible to take part in clinical research and/or clinical trials exploring new and promising treatments for dystonia. Please review the Mass General Brigham clinical trials and studies site for more information.

X-linked Dystonia-Parkinsonism

To learn more about X-linked Dystonia-Parkinsonism (XDP), a rare form of dystonia primarily affecting men of Filipino descent, please visit the Collaborative Center for XDP.