Having Myasthenia Gravis, COVID, and Pneumonia
While I realize that everyone's experience can be different, this is a personal account of my experience with COVID-19 and myasthenia gravis (MG).
Sudden breathing issues
In January 2021, I was in a breathing crisis - my single breath count was 5. My neurologist had my husband take me across the street to the local emergency room. I was then sent to a larger hospital for a week of inpatient intravenous immune globulin (IVIG).
I believe my neurologist was more worried than we were. I've had breathing problems like that before, but I've never heard of a single breath count until I met this neurologist, nor had any doctor ever taken my breathing problems that seriously before.
Between 1987, when my breathing problems first began, to January 2021, I remember about 6 breathing crises in-between those years. All just as bad as this one.
Being that my neurologist had just diagnosed me as having possible myasthenia gravis a few months prior and started me on Mestinon, we were a bit confused of why all the sudden the breathing was such an issue!
Refused IVIG treatment
So, I was taken by an ambulance 2 hours away to the larger hospital they had agreed (or so we thought) to start the IVIG treatments. I was placed in a cool dark room for about 3 hours before being seen.
The next day around noon I was given a repetitive nerve study which had negative results. I am also seronegative on MG blood tests. I was refused IVIG treatments even though they agreed I had myasthenia gravis.
Being released from the hospital
My neurologist was quite upset that they had not started the emergency inpatient IVIG treatment for me. He started me on CellCept and prednisone that day and continued to look for another larger hospital that could do the inpatient IVIG treatments. However, there are no others around this area except for that one.
This was in January 12, 2021, but I continued having breathing issues, and many other issues that come along with myasthenia gravis, until about October 2021. But, at that point it all seemed to get a little better.
The start of COVID symptoms
In January 2022, My husband tested positive for COVID! I was showing no symptoms except for sleeping a lot. But since I had just had surgery 2 months before, I wasn't too concerned with how much I was sleeping.
However, about a week later, I woke up with no sense of taste or smell. I had a little trouble breathing and I was still so tired even after over 10 hours of sleep with my CPAP machine for my sleep apnea. My CPAP works for me, even with the myasthenia gravis, but I was having a few problems breathing with the machine that day.
Testing positive
I also tested positive for COVID with pneumonia in my right lung and was able to get the infusion the next morning.
Like I said earlier, my MG had been pretty stable since October. Even with the COVID it had not gotten any worse. And the infusion really seemed to help the myasthenia gravis.
After the infusion
The day after the infusion I did end up back in the emergency room as my lips were turning blue and it was hard to breathe. I had pneumonia in both lungs, but the myasthenia was stable.
Over the past few months, the pneumonia has gotten better. For me personally, I would rather have the pneumonia than ever have another breathing crisis from myasthenia gravis again.
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