Many new patients don't know where to find a doctor who knows about myositis. Most patients see a rheumatologist, neurologist, or dermatologist. Some patients see two or three different types of doctors, using a team of doctors to get the best care possible. If you live in an area that's far from a major medical center, you may find that your family doctor is willing to coordinate your care in between visits to the specialist.
How do I find a doctor in my area? To find a doctor in your area, there are a number of places to look.
The Community Forum of this web site is a good place to start. Post a message to other patients, telling them where you live and what type of myositis you have. Many patients will give you the name of their own doctor and let you know how they feel about the care they receive.
Some of TMA's Medical Advisors also see patients. To see if one is located near you click here.
Find a major medical center or university/teaching hospital in your area. Since these hospitals are used for teaching and are the most comprehensive, many doctors will know about myositis and how to treat it.
The Johns Hopkins Myositis Center combines the expertise of rheumatologists, neurologists and pulmonologists in a single clinic so that patients benefit from a central treatment experience. Mayo Clinics are located in Jacksonville, Florida; Scottsdale, Arizona; and Rochester, Minnesota. These clinics are known for their understanding of a wide range of medical problems.
The American College of Rheumatology web site, at www.rheumatology.org, lists doctors by city and state, so you can locate a doctor in your area or within reasonable traveling distance.
On "The Brain Matters" website, funded by the American Academy of Neurology Foundation, click on "Working with your doctor" and enter your city and state for more information about neurologists in your area.
The Muscular Dystrophy Association has clinics across the United States, and you can find one by visiting the MDA web site at www.mdausa.org or by calling 1-800-572-1717. For more on Muscular Dystrophy organizations outside the U.S., see "Muscular Dystrophy Associations around the world."
How do I set up an appointment to see a new doctor about myositis?
Often, your family doctor or general practitioner (GP) will tell you to see a specialist (rheumatologist, neurologist or dermatologist) to order more tests. Your family doctor may recommend a particular doctor, or you can find a doctor using one of the ways listed above. If your doctor refers you to an MDA clinic, your tests and follow-up care may be free of charge. It may take weeks or months to set up an appointment with a specialist, so call the doctor's office as soon as you can. Ask to be put on a waiting list so if another patient cancels, you can see the doctor earlier.
Updated March 2012