How to Find a Doctor For FSH Dystrophy

Facioscapulohumeral dystrophy, or FSH dystrophy, is a form of muscular dystrophy that causes the face, upper arms, shoulders and legs to get progressively weaker. A missing chromosome causes the muscle degeneration that leads to the disease. Although there is no cure for the disease, treatment for FSH dystrophy usually involves a team of physicians and other healthcare professionals led by a neurologist who has had special training in treating muscular dystrophy. Finding a neurologist to care for a patient with FSH dystrophy requires a bit of research, but is a moderately easy process.

Instructions

Find a doctor who treats FSH dystrophy

• 1

  Talk to your family doctor or primary care physician first. Most diagnoses of FSH dystrophy occur at the family doctor or pediatrician level, and then get referred to a neurologist for further testing and confirmation of diagnosis. Your family doctor will have a list of neurologists in the area to talk to about FSH dystrophy. Although not all neurologists receive special training in the management of FSH dystrophy, your doctor can help you find the right neurologist.

• 2

  Search for a neurologist who specializes in muscular dystrophies by using online resources developed by the American Academy of Neurology. The AAN's online resources include a searchable database of neurologists in your area, categorized by city and state, as well as educational materials to help understand more about the disease and how to prepare for an appointment with a neurologist.

• 3

  Find a neurologist who treats FSH dystrophy by searching online resources for doctors who currently conduct clinical trials on new treatments for the disease or who perform research about the disease. Organizations such as the FSH Society and the Muscular Dystrophy Association maintain information about current clinical trials and research conducted at hospitals around the country, as well as the doctors who are studying the disease. The National Institute of Neurological Disorders and Stroke also maintains a robust collection of current research and the doctors who are conducting studies; contact information for these doctors is available in the information about enrolling in clinical trials or in the publication information for the scientific articles that the doctor publishes.