Guest Voice: Finally receiving an MG diagnosis helps me understand life
After 18 long years of doubt and unanswered questions, I finally have an answer
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Everything began when I was 12 years old, still in school, and suddenly started seeing double. I didn’t understand what was happening, and it scared me.
After school, I told my parents, who immediately took me to our general practitioner (GP) and arranged a visit with an optometrist. Both the doctor and the optometrist found nothing unusual, and eventually, my GP suggested it was anxiety. This was back in 1992, but for me, the uncertainty was only the beginning of a long, confusing journey.
Four years later, after finishing my O-levels (the equivalent of high school in the U.S.), my vision worsened dramatically. The stress of the exams seemed to make everything harder. Worried again, my parents took me to a different optometrist.
This time, something finally stood out. The optometrist wrote a note and urged my parents to take me to a neurologist as soon as possible. They didn’t waste any time.
The neurologist examined me carefully and mentioned a condition called myasthenia gravis (MG). I didn’t know what it meant, but the seriousness in his voice was unmistakable.
He told my parents to bring me to the neuromedical ward the next morning for tests. I spent three days in the hospital undergoing various examinations, but everything came back normal. With no answers, I was discharged, still confused and struggling.
I ended up on a ventilator in the ICU
From then until I turned 30, life felt like a constant battle. I would get exhausted even while eating, my arms and legs were always weak, and I had no explanation for any of it. I felt trapped in a body that wouldn’t cooperate. Although I was always quiet by nature, I tried to stay resilient and enjoy life where I could.
One day, I became very ill with influenza and went to my GP, who prescribed medication. He didn’t realize that I was actually struggling to breathe because my diaphragm wasn’t working properly.
I spent the whole night awake, unable to breathe well and feeling helpless. In the morning, I asked my parents to call the GP again. When he checked my oxygen levels, he immediately saw something was terribly wrong. He told my parents to take me to the hospital immediately and to hand over the note he had written.
By the time we arrived, I was unresponsive, and the medical team had to perform CPR. Thankfully, I came back, and they placed me on a ventilator in the intensive care unit (ICU).
It was the summer of 2011, and I spent three long months in the ICU, completely dependent on a ventilator. Doctors and consultants tried everything, running countless tests, but still found no diagnosis. I couldn’t eat, so they inserted a feeding tube to keep me nourished.
At that time, my older brother was studying at the University of Toronto. By chance, he shared my story with someone he met, a nurse experienced in caring for patients with MG. For the first time in months, there was a glimmer of hope. Remarkably, my brother traveled to Malta to help with my diagnosis.
After years of uncertainty, I finally received the most meaningful “certificate” of my life, a confirmed diagnosis of anti-muscle-specific tyrosine kinase MG.
After 18 long years of doubt and unanswered questions, I finally had an answer.
Although MG has challenged me in ways I never imagined, it has also shaped the person I am today. It taught me resilience, patience, and the true value of life — things many of us take for granted until they are threatened.
Living with this condition has shown me what really matters: gratitude, strength, and the ability to find meaning even in the most difficult moments. In many ways, MG didn’t just change my life; it helped me understand it.
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Note: 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.
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