This article was published in the Dystonia Dialogue.
One of the most common inquiries the DMRF receives is from people seeking help locating a doctor who is qualified to diagnose and treat dystonia. They may have received a tentative diagnosis from a general neurologist and need a movement disorder specialist to confirm or rule out dystonia. Their doctor may have relocated or retired, and they need help finding a new one. Or maybe they are interested in getting an additional medical opinion on treatment options.
Because treating dystonia is so specialized, seeing the appropriate medical professional can make a dramatic difference in treatment options offered and results from treatment. Helping individuals and families locate qualified doctors is one of the most important services DMRF provides.
Judy Draper contacted DMRF via Facebook for assistance locating a doctor and was provided a list of options near her home in Texas. “I looked them all up on the internet and selected several to call. I could not get an appointment with the doctors from the list for several weeks but I did get an appointment for later that week with a new member in one of the practices. After three years and seeing seven other doctors and having no answers, my husband and I sat and talked with him for over an hour. He answered our questions and has become a very valued member of my healthcare team.” Judy was diagnosed with focal foot dystonia associated with Parkinson disease.
Suggestions for locating a qualified doctor include:
Dystonia is a disorder that disrupts communication between the brain and muscles, and this prevents the body from moving normally. It may come as a surprise to many that there is a subspecialty of medical doctors who have dedicated their careers to caring for people with movement disorders and researching these specific neurological problems.
A movement disorder specialist is a neurologist with intensive training and experience specifically in movement disorders including dystonia, Parkinson disease, essential tremor, tics, and more.
A credential to identify a movement disorder specialist is that the physician has completed clinical fellowship training specifically in movement disorders.
Some movement disorder specialists may complete clinical fellowship training in neurophysiology, but this may indicate more of a specialty in epilepsy and seizure disorders rather than movement disorders.
Child neurologists with expertise in movement disorders may be challenging to locate. Some movement disorder clinics treat children while others may refer young patients to an affiliated child neurology program. Information about a doctor’s training and credentials may be available on the practice or medical institution’s website.
Depending on the type of dystonia, additional medical professionals may have appropriate credentials to offer diagnosis and treatment.
An increasing number of physical medicine and rehabilitation (PM&R) doctors (sometimes called “physiatrists”) treat dystonia, especially dystonia associated with cerebral palsy, stroke, and brain injury.
Credentials that may indicate a PM&R physician has expertise in dystonia include certification in electrodiagnostic medicine (EMG) and advanced training in neurorehabilitation. A small number of medical institutions offer advanced fellowship training for PM&R physicians specifically in movement disorders neurorehabilitation.
Additional medical specialties may treat focal dystonia that affects a specific area of the body. For example, neuro-ophthalmology is an ophthalmic subspecialty that addresses the relationship between the eye and the brain. This can include blepharospasm, a focal dystonia of the eyelid and brow muscles. Although experience with blepharospasm may vary because it is a rare disorder compared to more common eye conditions, neuro-ophthalmologists are often very skilled in administering botulinum neurotoxin injections for eye conditions, including blepharospasm.
Laryngeal dystonia (also known as spasmodic dysphonia) is a focal dystonia of the vocal cord muscles. Treatment often involves collaboration between a speech-language pathologist and otolaryngologist (ear, nose, and throat specialist). An otolaryngologist who has further subspecialized in the larynx (voice box), voice, and related problems such as swallowing is a laryngologist.
Your health insurance provider is also a source for identifying doctors and clarifying whether they are covered by your plan.
DMRF support groups and online forums may also help identify doctors. You may be able to connect with individuals who have firsthand experience with the doctor, the medical institution, and administrative staff—all of which may affect selecting a doctor that is right for you.
The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.