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My Myasthenia Gravis Journey – A Story for Insight and Support
In June 2022, my journey with Myasthenia Gravis began subtly—just some double vision and a drooping eyelid. By April 2023, the diagnosis was confirmed: AChR antibodies positive. I started on Mestinon and a few months later added Imuran, without corticosteroids. In September 2023, I underwent a thymectomy.
2024 brought relief. By October, I had been symptom-free for months and reduced my Mestinon to just one dose a day. My MGFA class was I, MG-ADL score only 2. Life felt stable.
But then came a turning point.
In late December 2024, the double vision returned. I restarted Mestinon, but it didn’t seem to help. On January 9th, 2025, I received an epidural infiltration (L4-L5) with 80 mg Depo-Medrol and lidocaine. It’s a long-acting corticosteroid—possibly the trigger for what followed.
Over the next few months, my symptoms worsened—more ptosis, more diplopia, especially with fatigue. Even five doses of Mestinon per day didn’t provide relief. Physical exertion (like a ski trip) made things worse. By March 19th, I reached out to my neurologist.
In April, new symptoms emerged. Swallowing became difficult, my speech slurred, and my right eyelid would droop completely when I was tired. A severe cold hit hard—I struggled to clear mucus, a complication of MG. I contacted my GP for medication to help, and requested time off work.
Looking back, this seems to be a delayed exacerbation triggered by the corticosteroid infiltration. Ocular symptoms started in December, bulbar symptoms didn’t appear until April. Mestinon alone isn’t enough anymore.
It’s time to rethink treatment. Corticosteroids or IVIG may now be necessary.
Sharing this in hopes it helps others recognize patterns, prepare for appointments, or just feel less alone in their MG journey.