I went from droopy eyes to nearly intubated in twenty-two days.
Myasthenia gravis does not usually arrive all at once. It walks up your body in a specific order, and each rung buys you less time than the last. Here is my ladder, with the dates, so you can recognize yours earlier than I did.
Your eyes go first, and it looks like nothing
July 27, at a Noah Kahan concert, my eyelids started drooping. Within the week I had double vision, screens were hard to look at, and I was visibly droopy on Zoom calls. On July 31 I stopped driving — four days in, and a full month before any doctor told me to.
Then it reaches your voice, and you are on a clock
My voice went nasal almost constantly. Chewing became work. This is the rung people explain away, because a nasal voice sounds like allergies. It is not allergies. The muscles that move your face and throat are the same family as the ones that move your diaphragm, and they fail in order.
August 12: breathing, after a Braves game
Shallow breathing at night. Sleeping upright because lying flat felt wrong. If you are sleeping propped up to breathe, that is not a pillow problem. Six days after this I was in an emergency room.
The thing I want you to take from this page: once it hits your breathing, the treatment choice changes. IVIG takes one to two weeks to work. Plasma exchange works in days. That gap is the entire reason I am typing this instead of something worse.
The week before the hospital, when it took my hands and my neck
I was already in crisis a week before anyone admitted me. My neck went weak — it felt like a concrete block was sitting on top of it and I couldn’t hold my head up. My fingers wouldn’t type. I couldn’t play Roblox with my kids. I couldn’t physically play piano. Raising my arms above my head felt like work.
On Sunday August 16 I couldn’t put on my own makeup. At church that morning my eyes were so bad they were closed, and someone had to walk me in.
I was two days from an emergency room and still calling it a bad week.
Twenty-two days from a droopy eyelid to a bag valve mask
Admitted to Emory. Twenty squats in a hospital gown in front of two neurologists, because squats to exhaustion are how you test for fatigable weakness. Five plasma exchanges over ten days. And on the night of the first one, in the ICU, listening to Alex Warren’s “Ordinary,” I suddenly could not breathe. I looked at my husband, rang the button, and said “help.” A nurse practitioner named Krista Garner bagged me by hand for about two minutes.
Twenty-six days earlier, my only symptom was that my eyes looked tired at a concert.
How I got here in the first place
The short version, because the ladder above is the part that might help someone tonight.
A heart scan finds a 4.8 cm mass in my chest. Calcium score zero. A contrast CT is recommended.
The recommended scan is never scheduled. By anyone. Including me.
A new primary care doctor scrolls back, reorders it. Now 5.2 cm. Recommend tissue sampling.
Biopsy. Thymic tissue that can’t be told apart from a thymoma. Surgery replaces a second needle.
A routine antibody screen comes back at 400 times normal. I have no symptoms. Twenty-six days left.
Roughly 40 percent of thymoma patients have myasthenia gravis, which is why that screen gets drawn at all. Mine was ordered as a box-tick. It turned out to be the most important test of my life.
Four places this almost got missed
A written recommendation for a contrast CT, sitting in a report I never read. Eighteen months.
“No prior exams available for comparison.” Two health systems, two sets of images, never on one screen.
A 6 mm lung nodule needing a repeat CT in three months, unrelated to any of this, and therefore very easy to lose.
My near-intubation exists in one line written two weeks later by a surgeon who wasn’t there. Otherwise, only in my own recording.
Send this to the person whose eyes have been looking tired
Myasthenia gravis is rare, treatable, and routinely mistaken for being tired. The full timeline, the podcast, and patient resources live at willuMGwithme.com.
Read the whole timeline →