Finding Myositis-Experienced Medical Care
You deserve a doctor or team of doctors who are knowledgeable about the inflammatory myopathies and the diseases that they often mimic. Experience in 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 (based on estimates). Many doctors have never encountered someone with Myositis and are unlikely to know the latest in research, diagnostics, treatments and potential 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, and other organs. 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, listens to their concerns, and who is experienced in treating Myositis. It is vital that you become your own healthcare advocate!
Tips to find a doctor:
Ask Other Patients
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 they 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. If turned down, 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 healthcare team. See the information below or call 1-800-411-1222. Certain expenses may be covered.
Clinical Trial Matching
We have partnered with Antidote Technologies to help you find your clinical trial match. Start your clinical trial match today.Start your clinical trial match
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