Delaying my diagnosis

Muscle Memories

“When were you diagnosed?” is a question that continues to haunt me to this day.

Throughout my life, every pulmonologist to neurologist has asked me this question, but the problem is that I don’t have an exact answer. Having a rare medical condition means that the exact moment of being diagnosed never occurred. I faced continual misdiagnosis, readmittance into the hospital and symptom-centered treatment plans before I was correctly diagnosed with myasthenia gravis.

My parents started to notice my health problems when I was 1, and we were on a family vacation. The first instance was when we were walking along the beach. I reluctantly dragged my legs along and refused to walk the few feet to the ocean. I collapsed onto the sand and placed my hands on both sides of the beach chair to steady my breathing as my eyes struggled to focus. They realized something was wrong when they saw a drastic change in my behavior. My dad seemed concerned that the once lively child who skipped along the sidewalk to beg for ice cream seemed lifeless.

This concern grew when I was unable to enjoy myself or sleep well without my mother holding me upright for comfort. As the cruise progressed, my health issues worsened. Soon, I was unable to swallow food. This worsened, and I began to choke even while eating soft foods. Despite only being a year old, I remember feeling as though a part of my body had been shut off or gone into hibernation.

As soon as the ship docked, my parents immediately took me to the emergency room. Upon arriving at the hospital, I was quickly admitted to the intensive care unit as doctors discovered that my oxygen was dangerously low. There was no time to grasp the severity of the situation, and my parents agreed to let the doctors intubate me to ensure I could breathe.

I had no recollection of feeling weak despite having extreme symptoms for an infant. I would collapse while walking and struggled to eat food. To ensure I was getting the nutrition I needed, the doctors gave me a feeding tube.  

After a month in the hospital, the doctors diagnosed me with meningitis. My family was relieved that I had a diagnosis because it seemed like my health would finally stabilize. I was so happy to have an answer after constant instability and even continued to ask doctors when I would be discharged. I was transferred to the general hospital unit and began to be hooked up to fewer machines. After a month, I was finally discharged, and I believed I was cured.

Nevertheless, the traumatic saga of my health issues persisted. A week later, I was readmitted into the hospital. This repeated as I went through a constant cycle of being admitted and then discharged. When my symptoms got better, I would go home –– only to be hospitalized a few days later. I was distraught over this lack of control over my health and life.  

This constant cycle became a routine part of my existence. Every time I entered the hospital, I was greeted by the pungent smell of Formula 409 cleaning spray mixed with hand sanitizer and the nurses who always knew my name. Each time I was admitted, doctors gave me a hefty dose of steroids for a week until my symptoms subsided and I was cleared to go home.

Instead of treating the root of the problem, the doctors simply alleviated my symptoms. They focused on making me comfortable with quick fixes instead of addressing long-term concerns. As a result, I would inevitably experience a flare-up of symptoms and have to be rushed back to the hospital. My parents and doctors began to suspect that my previous diagnosis of meningitis was false. So then, my quest for an answer continued with more testing. The name that I once had for my symptoms vanished, and with it, my hope for a solution did, too. I was emotionally drained not only by constant pain but by the frustration of being stuck in limbo. I felt that I was confined to a hospital bed –– without an accurate diagnosis.

After another chaotic month of being in and out of the hospital, I was officially diagnosed with myasthenia gravis by a pediatric neurologist. I felt a wave of relief but contempt that it took so long. The problem is that MG is a rare autoimmune disease that is rarely found in children, so doctors did not think to test for it. Additionally, misdiagnosis occurs frequently because the symptoms are constantly fluctuating and are common characteristics of other conditions.

Nevertheless, I felt comforted by the possibility of being able to live a normal life. I had a correct diagnosis. I was going to be treated, and I finally had hope. How could I fully understand my condition without being able to name it?

Being able to name my condition meant that I could find definitive information on what was happening to my body.  I was relieved to have an end to my state of uncertainty and perpetual isolation. I finally had some amount of knowledge to fight for the right treatment. I would no longer have to accept medical care that only addressed my symptoms.  

For the first time, I had the power over my health care and therefore, my life.

Simran Khetpal writes the Friday column on having myasthenia gravis. Contact her at [email protected].