Many new patients have difficulty finding health care practitioners who know about myositis. Patients with dermatomyositis, polymyositis, or necrotizing myopathy are usually treated by rheumatologists. Those with dermatomyositis may also work with a dermatologist. Those with IBM are often treated by neurologists. Some patients also consult with a pulmonologist for problems with lung disease or a cardiologist for problems with heart disease. Most patients can also benefit from the expertise of a physical therapist or rehabilitation specialist to assist in developing an exercise plan.

Patients often see a team of two or three doctors to get the best care possible. Your primary care doctor (internist or family practitioner) can coordinate your day-to-day care between visits to the specialist. Here are some options for finding and working with these medical specialists, especially those who are knowledgeable about myositis:

Ask other patients – TMA members are delighted to recommend physicians who have been helpful to them. Post a message to other patients in one of the following forums, 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. They can also offer advice on how to work with physicians.

Local TMA KIT (Keep in Touch) support groups also often keep a list of physicians their members have used. You can look up support groups near you or contact TMA for the KIT group nearest you. Contact the KIT group leader for their recommendations.

TMA also maintains a list of practitioners recommended by patients from which we can offer suggestions if you contact us. In most cases, TMA does not have direct knowledge about these providers, so we cannot vouch for their quality or expertise. Please use your own judgement when evaluating these practitioners.

Find a major medical center or university/teaching hospital in your area. These hospitals have medical schools and researchers, so it’s more likely that the health care practitioners who work there will know about myositis and how to treat it. Contact the rheumatology, neurology, or dermatology department at these institutions and ask if they have a physician familiar with myositis on staff.

TMA is connected with several Myositis Research and Clinical Centers around the country. In most cases, current or former TMA medical advisors work at these multidisciplinary centers.

Find a TMA medical advisor. The Myositis Association strives to have myositis experts from around the world on our Medical Advisory Board. Most of these specialists take new patients and are also available to consult with your primary care physician or local rheumatologist or neurologist. If none of the TMA advisors are close enough to where you live to make travel possible, the advisor nearest you may be able to suggest a colleague in your area.

Another option – You may be eligible for inclusion in the Natural History of Myositis study at the National Institutes of Health. While this is not a substitute for ongoing medical care, this study evaluates patients with adult- and childhood-onset myositis to learn more about the causes of these diseases and the immune system changes and medical problems associated with them. No treatment is offered, but once you are involved in the study, NIH physicians will work with your local health care team. Follow the link above or call directly: 800-411-1222. After a brief visit, you may also be eligible for an evaluation of 1-5 days, and certain expenses may be paid.

Other resources

The American College of Rheumatology web site lists doctors by city and state, so you can locate a doctor in your area or within reasonable traveling distance.

The American Academy of Neurology also has a search page where you can enter your city and state to locate a neurologist in your area.

The American Academy of Dermatology is the largest organization of dermatologists. You can search for a provider here.

The Muscular Dystrophy Association has clinics across the United States. Find one by visiting the MDA web site and enter your zip code, or call 1-800-572-1717.