Finding Myositis-Experienced Medical Care

You deserve a doctor or team of doctors who are knowledgeable about the inflammatory myopathies and the diseases that often mimic them. Experience with the diagnostic process is helpful to ensure a proper diagnosis and to begin prompt treatment. There are many reasons why finding a doctor that meet these criteria can be difficult:

Myositis, Inflammatory Myopathies are rare diseases

In the U.S. alone there are over 850,000 doctors, yet fewer than 3,200 people are diagnosed with any type of Myositis each year. Many doctors have never encountered someone with Myositis and are unlikely to know the latest in diagnostics, treatments and possible complications. In the not-too-distant past, medical schools stressed that Myositis did not cause pain. It is now much more recognized and accepted that pain is part of the symptoms suffered by many with this disease. It is important that the doctor overseeing your care understands all aspects of Myositis.

What type of doctor(s)?

To add to the confusion, Myositis falls under several categories. While it’s an autoimmune disease, it’s also a neuromuscular disease and often a disease of the skin, lungs, etc. Due to the variety of symptoms and complications which affect people with Myositis, it’s often confusing to know what type of doctor will understand and treat your specific issues. A neurologist, dermatologist, rheumatologist or immunologist could oversee your care, but you may also need to see other specialists such as a pulmonologist, cardiologist, gastroenterologist, rehabilitation specialist, and pain management specialist. 

The variation of symptoms

There is a great variety of symptoms within the subtypes of Myositis as well as from person-to-person. Some patients experience only muscle weakness, while others have skin issues which may or may not be accompanied by muscle involvement. Add in other manifestations of the disease experienced by some, such as difficulty swallowing or breathing, and the frustration factor increases to find proper medical knowledge and care.

Treatments not working?

Just as symptoms vary, so do responses to treatments, and it is sometimes necessary to find doctors who have spent years seeing hundreds of Myositis patients.  Often effective treatment ends up actually being a combination of treatments, which takes knowledge, experience, time and patience on the part of the physician.

It is easy to understand why so many patients experience frustrations in finding a physician. It is imperative that patients find a doctor who can recognize the symptoms and is experienced in successfully treating Myositis. It is vital that you become your own healthcare advocate!

Tips to find a doctor:

  • Ask other patients

    Post a request for physician recommendations in any of our online Myositis support groups or on our MSU Myositis Network.

    In your post, be sure to include: 

    • – Type of doctor you are looking for (Rheumatologist, Neurologist, Dermatologist, Pulmonologist, Rehabilitation Specialist, etc)
    • – The area you are looking in, including a city name that is close for reference.
    • – If you are willing to travel. (Remember, MSU offers financial assistance for travel)

  • Search American College of Rheumatology

    Use the form on the website to find a Rheumatologist in your area. Option to search adult and pediatric.

    Find a Rheumatologist

  • Search American Academy of Neurology

    Use the form on the website to find a Neurologist in your area. Search by sub-specialties as well.

    Find a Neurologist

  • Contact the Muscular Dystrophy Association (MDA)

    Call 1-800-572-1717 or visit the sites below:

    United States: www.mda.org/locate
    Canada: www.muscle.ca/
    UK: www.musculardystrophyuk.org
    Europe: www.eamda.eu
    Australia: www.mda.org.au/
    New Zealand: www.mda.org.nz

  • Rheumatologic Dermatology Society (RDS)

    RDS is comprised of doctors who are trained in both dermatology and rheumatology, and is especially helpful for people with Dermatomyositis. The organization has member physicians in 18 U.S. states and in Canada.

    See listing of RDS Physicans

  • Contact Us

    If you still need help locating a physician in or around your area, feel free to contact us. We will help as best we can.

    Contact MSU via email

    Contact MSU on our Facebook page

  • Try a Google Search

    Another way to find doctors who focus on Myositis in your area is to Google some keywords. For example, if you live in Atlanta, GA, you can search “Dermatomyositis doctor Atlanta.” The information you find can provide more in-depth information about physicians in your area who understand Myositis.

    You may also find information about doctors who have published research about Myositis or who have participated in drug trials, served on related boards, or have spoken at conferences. Once you have identified those in your area who you believe are experienced with Myositis, call or email the offices to determine the appointment process.

Looking Outside Your Area

If you haven’t responded to treatment, or live in an area where Myositis-experienced doctors are difficult to find, you may consider traveling to a medical center where you can see a doctor who specializes in Myositis.

If you have exhausted your efforts in finding proper medical care for your particular disease, and believe your only option to finding expert medical care is away from home, ask your insurance company if it will cover travel and medical expenses for a specialist in the field of Myositis. Make sure you can provide documentation about your symptoms, your attempts to find Myositis-specific medical care locally, and the credentials of the specialist(s) you have identified. You may receive a negative response at first, but you have the right to appeal this decision through multiple channels. Also, find out from the medical center or the physician you intend to see if they will take your insurance.

Studies in the Natural History & Pathogenesis of Childhood-Onset and Adult-Onset Idiopathic Inflammatory Myopathies

You may be eligible to participate in the Natural History & Pathogenesis of Childhood-Onset and Adult-Onset Idiopathic Inflammatory Myopathies Study at the National Institutes of Health in Bethesda, Maryland.

This study evaluates patients to learn more about the causes of these diseases and the immune system changes and medical problems associated with them.

No treatment is offered as part of this study, however once you are accepted in the study, NIH physicians will work with your local health care team. See the information below or call 1-800-411-1222. Certain expenses may be covered.

View the trial information

Myositis Centers

Not a complete listing, more to be added

© Myositis Support and Understanding Association, Inc. 2010-2018. All Rights Reserved. MSU is a patient-centered 501(c)(3) nonprofit organization.

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