Sudden Onset
My journey with Myasthenia Gravis began unexpectedly. I had always been fit and healthy – so much so that, as a pilot, I passed annual Class 1 Medical examinations with ease. These detailed medical checkups assessed everything from ECGs to vision and respiratory function, and never showed any signs of any pending illness!
In early 2023, I started to notice something unusual: my laptop and monitor screens felt intensely bright, and I developed a squint, which soon turned into blurred vision. Thinking I might just need glasses, I visited an optician. While my vision was generally good, the optician noted that the tracking in my left eye was off centre. I was then referred to an eye specialist at my local hospital.
Worsening Symptoms
Despite various tests, the eye specialist couldn’t identify the issue and referred me to Neurology, suspecting Myasthenia Gravis, which was not a condition I had heard of before.
As I waited for a Neurology Appointment, my symptoms worsened. My arms became weak, chewing became difficult, and my left eye eventually became fixed in the far left position – which cause me huge vision problems.
Things escalated dramatically in March 2023 after a business trip to Copenhagen. I returned with stroke-like symptoms: my face had dropped, my speech was slurred, and I couldn’t lift my laptop bag into the plane’s overhead bin. Once I landed back in London, I went to A&E.
Diagnosis and Early Treatment
Once in A&E, a neurologist quickly diagnosed me with Myasthenia Gravis and prescribed a trial dose of Pyridostigmine. The improvement in my symptoms was almost immediate.
Further tests, including a CT scan, revealed a tumor on my thymus gland, which is a common trigger for Myasthenia Gravis sufferers. The gland, which serves no essential function in adults, was close to pressing on my heart – so removal was required.
Between March and April 2023, I was stabilized on Pyridostigmine and a steroid called Prednisone. Once stable, surgery was recommended.
Thymectomy and Recovery
Soon after my MG symptoms became stable, I received a call from The Royal Brompton Hospital in Chelsea to schedule surgery. I opted for open chest surgery (a sternotomy), which took place on 18 July 2023. I’ve written more about the operation elsewhere, but in short – I had surgery on Tuesday and was home by Friday.
Recovery involved some discomfort (my chest had to be wired shut), but overall, it was straightforward.
Medication and Relapse
By August 2023, I was on 60mg/day of steroids – well above the standard dosage of 40mg. The goal was to taper the dose gradually. Between August 2023 and March 2024, I reduced my dose to 20mg/day, in the hopes that the thymectomy had pushed me into remission. Unfortunately, some symptoms returned in March, and by April 2024, I experienced a severe flare-up, including new breathing difficulties, which U had not had before.
My steroids were increased back to 60mg/day, with a plan to taper slowly by 5mg each month once things stableised.
Current Status (as of May 2025)
By June 2024, I had stabilised and was prescribed Azathioprine – an immunosuppressant that helps reduce the need for high-dose steroids. As of May 2025, I’m on 18mg/day of steroids and aiming to reduce that to 10mg by December – it’s a long a road!
Thankfully, I have not had a recurrence of symptoms since, though tapering medication always carries risk. I’ll continue updating this journey over time.