How A Rare Neuromuscular Disease Saved My Life

The story of Joseph

Strange Symptoms

My jaw literally dropped.

Chewing, speaking, and swallowing led to severe bulbar exhaustion, and the inability to move my jaw. The symptoms progressed to life-threatening choking episodes and slurred speech. As the nightmare advanced my right eyelid began to droop, drooling became constant and muscle weakness spread to my right arm and leg.

What’s Happening to Me?

Terrified, I searched for answers. I visited general practitioners, ear, nose, and throat specialists, and homoeopaths. Misdiagnoses included infections, stroke, heart attack, and even psychological factors.

A Diagnosis!

Finally, admission to Toronto General Hospital’ emergency department led to a specialist administering a Tensilon test. This resulted in a life-changing diagnosis: Myasthenia Gravis (MG) – a rare neuromuscular disorder, with a prevalence of 14 in 1000,000, that occurs when the immune system attacks the body’s own tissues.

How did Myasthenia Gravis save my Life ?

Further scans revealed a rare cancer – Thymoma. With a prevalence of 1.5/100,000,000, my stage 3B cancer invaded my pericardium (heart lining) and right lung.

Thymoma and MG account for around 15% of all MG cases. Had the symptoms of MG not manifested when they did, my Thymoma tumor would have invaded/spread further into more vital organs.

Living with Myasthenia Gravis

Today, managing my MG requires constant monitoring, adjustments to daily routines and adapting activities to accommodate my physical limitations. A daily cocktail of Immuno-suppressants and Acetylcholinesterase inhibitors enable me manage my symptoms and participate in life.