Recovering from a myasthenia gravis crisis that sent me to the ICU

Myasthenia gravis (MG)  doesn’t usually explode — it erodes. It might be weeks of throat clearing, feeling like you just can’t catch your breath, or eye droop giving everyone the mean mug and acting like it’s filing a workplace grievance.

The night I had to crank my BiPAP machine to the maximum support I was comfortable with at home just to keep my chest moving, I looked at my husband, Justin, and rolled my eyes. I gave him that “here we go again” look while he helped me pack a hospital bag. What I felt was irritation — the deeply exhausted kind — because I knew exactly where this was heading.

By the time we arrived at the emergency room, my respiratory distress was already flirting with failure. My local ER isn’t equipped to handle a patient like me, so they found a hospital with a neurologist on staff. I was admitted and transferred to Duluth, Minnesota, overnight. I’d been here before, 18 months earlier, and feel like I never fully recovered, so this wasn’t a surprise. It was more like a rerun I didn’t ask to watch, which is saying something since I don’t watch television.

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Respiratory failure is about more than breath

Crisis management is all about airway management. That includes those lovely bulbar muscles that manage swallowing and keeping the airway clear.

Bulbar weakness is a betrayal. One day you’re eating normally, and the next you’re doing the chin‑tuck maneuver to keep food and drink out of the “wrong pipe.”

Quick critical interruption: The chin tuck is not a universal fix. It should only be used after guidance from a speech‑language pathologist. Done wrong, it can make swallowing worse.

Back to our irregularly scheduled crisis update.

By late afternoon, even saliva was choking me. They put me on NPO (nothing by mouth) and handed me a suction tool. I was pissed that the interventions weren’t working better, that I was sliding backward instead of stabilizing, and that my own spit was trying to take me out.

The attending physician ordered additional intravenous immunoglobulin therapy and a steroid blast big enough to make my bones vibrate. Crisis care always feels like surrender — you hand your body over and hope it cooperates. Through the night, things finally shifted. By morning, I could manage a few spoonfuls of applesauce.

Justin became my voice, my witness, and my buffer. MG doesn’t just hit the patient; it affects the entire household.

Each day brought something better: moving out of the intensive care unit, passing my swallow test, experimenting with less BiPAP time, and eating real food again.

My stamina was — and still is — wrecked. But the direction was finally upward. I faced dozens of frustrations — equipment bottlenecks, missing providers, the slow pace of rebuilding strength. Those are unavoidable.

But so are the moments of relief if you remember to look for them: a caramel iced coffee from Dunkin’, a visit from family, a night of sleep that didn’t feel like a wrestling match. And then, finally, the words I’d been waiting for: “You’re well enough to go home.”

I spent a week in the hospital. I’m back home and on my BiPap machine. I have enough energy to exist.

Recovery is going to be annoying and frustrating and full of unknowns. But that’s part of life with MG. There will be more adjustments, more discussions, more and days when my body reminds me that MG is unpredictable.

But today, I’m home.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.