Tips to Find Myositis-Experienced Medical Care

You deserve a doctor or team of doctors who will be able to give a correct diagnosis and have the knowledge and experience to treat your symptoms. But finding a doctor with whom you have confidence can be challenging for a variety of reasons:

Myositis is really rare

In the U.S. alone there are more than 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 effect 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 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.

Your treatments may not be 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!

Helpful Tips:

  • Post a request for physician recommendations in any Myositis online support group, such as the Myositis Support and Understanding Facebook groups and the MSU Myositis Network on our website, telling the members where you live, or where you are willing to travel.
  • The Myositis Association sponsors support groups, called KIT Groups, in various areas of the U.S. where Myositis patients and caregivers meet to share experiences. You may want to join and/or merely request physician referrals from the group’s members. To find contact information for a support group in your area, click on the following link and enter your zip code: www.myositis.org/support-group-search.
  • TMA’s Medical Advisory Board is comprised of approximately 20 doctors, some of whom see patients. The link to the list and contact information for these doctors is: http://www.myositis.org/about-tma/medical-advisory-board.
  • Myositis is considered a neuromuscular disease and falls under the Muscular Dystrophy Association. MDA sponsors more than 200 clinics in the U.S. and provides a clinic locator on its website which allows you to enter your zip code to find the closest clinic. MDA clinics are typically operated by the neuromuscular department at university teaching hospitals and often have pulmonologists, physical therapists, and psychologists on staff.

    It is always a good idea to call the MDA office listed in your search results to request its assistance and allow them to explain MDA benefits to you. While MDA sponsors these clinics, it does not dictate the way these clinics are operated. Some clinics may require a physician referral, while others allow you to make an appointment directly through the regional office or specific clinic.

    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) 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. To find a RDS-related physician: http://www.rheumaderm-society.org/
  • 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 find out if it would be a good fit for your symptoms.

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.

© Myositis Support and Understanding Association, Inc. 2010-2017. All Rights Reserved. MSU is a 501(c)(3) nonprofit organization.

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