The Sudden Onset and Self-Diagnosis of Myasthenia Gravis

My journey began with a simple cold I caught from my daughter during spring break. I was quite ill, but on the third day, a profoundly unsettling symptom appeared: I could not swallow my own saliva. This terrifying issue woke me up in the middle of the night. I immediately suspected a serious underlying health problem, perhaps an autoimmune issue.

The next day, I started researching my symptoms online. My search led me to Myasthenia Gravis (MG) and Sjögren's Syndrome.

The struggle for a diagnosis

The symptoms quickly worsened, and severe eye pain and double vision became my next nightmare. I did a simple self-test: covering one eye immediately made the double vision disappear, confirming normal single vision. This test cemented my self-diagnosis of MG.

I immediately booked appointments with a local primary care doctor and an eye specialist, but both were unhelpful. The eye specialist, who often diagnoses MG, simply thought I had dry eyes. The doctors didn't believe me and advised me to see an ENT, which yielded a normal study. Doctors began suggesting I was suffering from depression or thinking too much.

Frustrated, I demanded an MRI. The initial local radiologist report claimed I had micro fibrosis in the brain.

Breakthrough at MGH

I traveled to the emergency room at MGH (Massachusetts General Hospital), a world-class facility. By now, I had new, undeniable symptoms: eyelid droop (ptosis), a stiff neck, and difficulty holding up my head.

The MGH ER doctor agreed with my suspicion and repeated all the scans. To my surprise and relief, the local hospital had misdiagnosed me; I did not have fibrosis in my brain. They immediately sent me to their eye specialist, who finally and definitively diagnosed me with Myasthenia Gravis.

Crisis and recovery

I was sent home and started on Mestinon. It worked right away, but only for a single day. My symptoms quickly worsened—I literally could not hold my neck up. I contacted the hospital team via the patient portal, and they called me the very next day, telling me to come to the hospital immediately.

I was admitted for two weeks. I received plasma exchange (PLEX) and infusion treatments. After the very first plasma exchange, my neck issue was gone, and I could stand normally. My double vision returned to normal after three days. I received an infusion before I was discharged.

The amazing MG team and the specialized care I received were instrumental in my recovery. I am now on a maintenance plan, receiving infusions and regular doctor appointments every three months.

Lessons learned

I strongly recommend adopting a healthy diet, specifically Mediterranean and Asian cuisine, and giving up junk food and sugar (though I occasionally allow myself a cookie or snack). Myasthenia Gravis is challenging and ever-present. I've learned to listen to my body's signals and the importance of finding an expert medical team.