I’ve wondered if the recent talk of “generalization” or the progression from ocular to gMG is accurate. Although emergence of my ocular symptoms triggered the need for testing and diagnosis in 2019, which revealed I actually had gMG with no overt symptoms, looking back 20 years I recalled the results of a stress test that showed low exercise tolerance: my muscles tired much faster than others with my fitness level and age. I also had been tripping going up stairs for 5 years before diagnosis, and when walking for 2 years. In my case, the ocular symptoms actually came later than the generalized MG symptoms, it was simply a matter of the ocular symptoms couldn’t be ignored. It only took a month for me to see a neurologist and be diagnosed with gMG.

As to gMG’s progression, I was relatively symptom free on mestinon and steroids in the first 6 months, then a low kidney function test and a mestinon side effect of twitching lower eyelids had me switched to cellcept in late 2019. I led a relatively normal life for five years except for infections due to taking immune suppressant medication. Then I caught a respiratory virus which my doctor said was likely RSV or Covid even though I didn’t test positive for either. It lasted 6 months, I cracked a rib coughing, and I got an MG flare that knocked my energy out.

It’s been a long road back and I had another flare this February when I went to Disneyland on an unseasonably hot day with my family. Despite preparing by building stamina ahead of time, and using a scooter on site and not overdoing it, I had zero energy for weeks afterwards and could only walk a few feet before getting out of breath. My neurologist had prescribed Mestinon as a top-up for when I noticed symptoms, so that helped me get through it but heat intolerance is still an issue at any temp above 75F/24C and I’m only up to walking for 35 minutes at a slower pace. My neurologist is slowly reducing my dose of Cellcept by 125 mg daily every 2 months to find a dose that controls my MG without causing constant infections.

I still haven’t reached the energy level I had in my first 5 years after diagnosis but focusing on building strength and stamina, eating healthy and getting good sleep is getting me closer all the time. I regularly see a dietician and personal trainer, and I start seeing an occupational therapist next week who is going to help me get started in Tai Chi. I find the support in private sessions very valuable in building foundational skills and coordinating activities so I don’t get overwhelmed.