[Rebecca]

I live in Washington State and became sick with a respiratory virus in January 2020, and again in February 2020. It was in February and March 2020 when other odd symptoms began. I had extreme fatigue, was unable to walk very far, let alone stand to take a shower. I lost my voice, and it felt like food was getting stuck in my throat and esophagus. My right eye began to close unvoluntary when I looked up. I had constant dizziness and weakness, developed livedo reticularis on my legs and arms, had a mouth full of sores, and lost massive amounts of hair. After seeing a neurologist, I was told I had probable generalized myasthenia gravis (although I was seronegative) and was sent to three different neurology specialists (and countless other specialists, such as endocrinology, cardiology, etc ) for additional tests. I was put on Mestinon and intermittent steroids for seven months while I went through a series of tests, and was in speech therapy to regain my voice.

After all this I was told I don’t have myasthenia gravis and was taken off the meds. I’m much better but I’m still not 100%. I take 10 steps forward and five steps backwards, it seems. I don’t have proof of a covid infection because there were a shortage of tests during the beginning of the pandemic, and there was different criteria to qualify for a test (must have recently traveled, etc.). I’m now participating in a four-year NIH study for long covid, which is only a theory that I may have. It’s not definitive. All I know is my heart goes out to you all with confirmed MG. I’ve never been that sick, and I’ve never felt so dissolute as when I received that probable diagnosis in 2020. You have my full compassion and support.

I’ve now had four covid shots (I’m over 50) and I am risk adverse when it comes to covid (and other viruses, for that matter). I still wear N95 masks indoors and keep most all activities outdoors. I’m terrified of ever being that sick again, and the constant medical bills during that time frame weren’t ideal either. I also don’t wish to contribute to anyone getting sick because of me (the mRNA vaccines don’t block transmission) and I don’t wish to contribute to the rise of new (and potentially worse) variants. But I understand everyone has different risk tolerances.

Anyways, I wish everyone in this forum a joyful and healthy life. I will continue to support your causes although I don’t have MG.