By Darlene Butler
Throughout my nursing career, I worked with many physicians and providers. Most were kind, helpful, and patient centered. Occasionally, I would encounter a provider that didn’t give great patient care; they were rushed, arrogant, or dismissive. There were also doctors that didn’t have the knowledge or experience to diagnose some patients. But who knew I would one day encounter these sorts of providers in my own diagnostic journey?
This journey began in early 2022. I was highly active, enjoying biking, going to the gym, hiking, and anything that involved family. My legs began to feel heavy, as if I were moving through wet concrete. I rested for a couple of days and felt better. However, a few weeks of leg heaviness and weakness led me to seek medical care.
My primary care physician found nothing of great concern in my exam or blood tests. By now the heaviness in my legs was constant, my arms were weak, and I was having difficulty with balance. I was referred to a neurologist for evaluation. This doctor was rude from the moment he entered the room. When he checked my muscle strength, he yelled and accused me of not trying hard enough. Additional blood tests and MRIs of my brain and spine were mostly unremarkable. I did have an abnormal monoclonal protein in my blood, so I was sent to a hematologist for further testing.
Unfortunately, this was another provider who was not interested in helping me find answers. I was now unable to speak without my voice shaking, and I would occasionally choke during meals. I was struggling with nausea, poor appetite, and I was losing weight. The hematologist was dismissive of my symptoms and was only interested in the monoclonal finding. Additional blood tests were done, and upon follow up I was told, “you don’t have cancer.” As I tried to ask questions, the doctor held his finger up to cut me off and responded, “I don’t care about those things.”
The unsympathetic attitudes of these specialists made me angry. I decided to do my own research, and I spent weeks tracking my symptoms and trying to identify causes. I would occasionally reach out to my primary care provider, and we would discuss tests or referrals that might be helpful.
Over the next few months, I reached a point where I could no longer wash my own hair, get dressed without help, cook, clean, drive, or walk up a few steps without feeling like I had run a marathon through quicksand. I felt hopeless and defeated. My primary care provider finally sent a referral to a teaching hospital in a neighboring state. There, I was seen by hematology, cardiology, pulmonology, gastroenterology, and a neuromuscular specialist. Each of these doctors was very attentive and concerned about my declining condition, but none were able to reach any conclusions. Over several months I underwent dozens of blood tests and diagnostic procedures. There were a few things out of range or inconclusive, but nothing definitive and I was once again left without answers.
Nearly two years after my symptoms began, I still had no diagnosis or treatment plan. On the recommendation of a family member, I set up an appointment with a rheumatologist who managed their lupus care. I made the three-hour drive to my first visit a few weeks later. The rheumatologist reviewed my medical records and completed an exam. She pulled a piece of information from this record, a result from that record, and another tidbit from another specialist’s exam note. After a 45-minute appointment, she was confident I had myositis. Another blood test and a few weeks later I had a diagnosis of dermatomyositis. Today, after 18 months of treatment, my symptoms have greatly improved. I still have limited endurance and experience crippling bouts of fatigue, but I can get through most days without assistance.
During my diagnosis journey, I encountered providers who were as determined to find answers as I was. I also had some terribly negative experiences with doctors who simply didn’t care about me as a patient. Others just lacked the knowledge to help me with my specific condition. I learned that nobody knows me and my body as well as I do, and nobody will be a better advocate for me than I will be.
During your own myositis “adventure,” keep pushing until you find that one provider who wants to assist you in finding answers. You will likely run across some doctors who dismiss you and your concerns or simply don’t know how to help in your case. But be your own best advocate and don’t be afraid to seek a second opinion…or a third.
Darlene is a retired RN/MHA with experience in provider and patient education. She also worked extensively with insurance providers, Medicare, and Medicaid. She was diagnosed with dermatomyositis in 2024. She lives in Idaho with her husband and cat.
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