First Crisis
I was a newbie. Just diagnosed in March of 2021. I was put on Mestinon and started my birthday trip to several cities in early July.
How the symptoms began
As it began, my only issue was tiredness and a little bit of a droopy eye. As the trip continued, swallowing became worse and worse. Getting the pills down was difficult and I wasn’t eating much a few bites and that was all
We decided we’d see a doctor when we got to our next stop in New York City. After landing and dropping our bags my wife and I headed to the ER When I told them I had MG.
A full-blown crisis
I went right in and saw a young neurologist who knew what to do. I was put in a step-down unit for observation that afternoon. By the next day, the symptoms hadn't cleared and I was becoming upset.
Nurses came in and took my vitals. At that point, I began breathing rapidly and shallowly. Within minutes I was on a cart heading somewhere I woke up three days later. It was a breathing crisis and I'd been intubated and given a full dose of IVIG.
A negative event turned into a learning lesson
Luckily the hospital was well-versed in MG symptoms and procedures I was there two weeks and left with a feeding tube because I couldn’t swallow. I rehabbed for two more weeks and went home.
I stayed on the liquid diet for three months until a nurse said, "Did you ever talk about dilating your esophagus?" Well, we had a gastroenterologist do the ten-minute procedure, and the next day I started eating real food again. My neurologist put me on Prednisone and CellCept which I still use today.
Thankful for the lesson
I was lucky the ER and hospital were trained in dealing with MG. We picked it because we looked into NYC hospitals that had that expertise.
As I said we're new to the disease and didn't understand the signs of exasperation or crisis. All is well right now but I’m staying on top of new developments, going to support group Zoom meetings, and reading all the MG websites. Always learning!
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