Fellow MG Patients, We Know Our Bodies the Best

Around age 5, I began having difficulty walking. A couple of times a day I would get a strange, pins-and-needles sensation in my right leg. I was young and didn’t think much of it. When my parents became aware, they were concerned. Multiple doctors told us not to worry. My mother persisted. They told her it was growing pains.

Ma wouldn’t be pacified. She had other children and understood growing pains. In those long-ago days, a mother’s observations didn’t impress many doctors. There was more than a hint of misogyny.

Eventually, due largely to Ma’s insistence, we found ourselves at Boston Children’s Hospital, where I was diagnosed with a brain tumor and underwent two surgeries. The first was to remove the tumor, and the second was to reconstruct the right side of my skull. My mother had been right.

Luck blessed me three times. Due to early detection, complete removal of the tumor was possible. I had parents who understood their child’s body. They trusted their knowledge and instincts enough to know when something was wrong. Lastly, I had care from a gifted neurologist who listened to a mother’s observations.

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That experience taught me a valuable lesson. Doctors, despite their best intentions, aren’t always right. A patient should listen carefully to medical experts, but patients’ observations about their bodies are crucial, valid information. Careful combination of these two informs good decisions.

In 2020, I was diagnosed with myasthenia gravis (MG). To bring the MG under control, I was prescribed large doses of prednisone. I had little experience with the medicine and was unaware of its many side effects. I faced a learning curve as I struggled to learn about MG and its treatments. Eventually I would learn about a negative side effect of prednisone.

In May 2021, I began experiencing mobility issues. By July 4, I was unable to walk without assistance. Swelling developed on my inner left thigh, and I began experiencing horrific back, leg, and groin pain.

My neurologist ordered MRIs of my spine, and my general practitioner (GP) ordered sonograms of my groin. I had four visits to emergency rooms. Throughout I kept asking about the swelling in my thigh. Repeatedly I was told it was nothing — perhaps fat deposits. My body told me there was more to it.

I grew frustrated and lashed out. Friends were frightened during a discussion about my mobility problems when I exploded with “Why won’t someone listen to me? Could someone who knows what they’re doing look at my dang leg?” That someone soon came into my life.

Last December a severe myasthenic crisis landed me in Maine Medical Center. There, I was under the care of a wonderful doctor. I told him about the swelling, and he examined my thigh. He ordered an X-ray, and when he read it, he saw something wrong with the bone. He wanted an MRI done immediately.

The MRI confirmed what I had known for almost a year. There was something wrong with my left leg! Large doses of prednisone, necessary to bring my MG under control, resulted in avascular necrosis of my left hip. The bone died from lack of blood supply. The diagnosis wasn’t good news, but at least the mystery was solved.

Today, I’m unable to walk and confined to the house. I’ll have hip replacement surgery July 19. I’m grateful, but I wonder if the pain and suffering of the past year might have been avoided. When I told doctors I was sure something was wrong with my leg, this shouldn’t have been dismissed. Maybe the bone wouldn’t have died. Perhaps surgery wouldn’t have been necessary. Just conjecture!

I was reluctant to challenge a doctor. More than once my observations were met with “When did you graduate from medical school?” Unsure of myself, I’d answer, “Never. But I’ve been with this body since day one and know it better than anyone.”

My GP and neurologist are second to none, and when developing a treatment plan, their recommendations were crucial. Input from family and friends was incredibly valuable. My observations about my body were just as crucial and valuable. Successful treatment requires a combination of medical expertise, patient observations, and input from significant people in the patient’s life.

A rare disease diagnosis sends you into uncharted territory. Rely on the advice of medical experts. Listen to your family and friends. But don’t forget, nobody knows your body better than you.

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.