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Have You Had COVID-19 with Myasthenia Gravis? What Was Your Experience?
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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.
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Feeling better today.
Slept well last night. No chills. Still no fever. O2 level 95. Less coughing and sneezing.
Scheduled for my monthly IVIG next week. The Neuro says OK as long as I test Negative.
Wondering if I will be able to get in some yard work tomorrow.
Scott
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Hello, I just was diagnosed with Covid Aug.25th, neg. home test, but positive PCR test. I knew I was sick, becase I was woken from a sound sleep by a screaming headache with a very sore throat. I have had all my vacinations and booster, but was considered high risk for Covid complications or death so I was given the monoclonal antibody infusion. My kidney function was too low to take the oral antiviral. I have more shoulder weakness than normal, which might be from coughing so hard for a couple of days. I think the worse thing that hasn’t gotten better, even though I rarely cough now, is my eyesight. I have no control over my eye muscles. My eye lids are droopy all the time and my double vision is awful. My eyes are very red and dry. I am only taking Mestinon and that is not helping at all. I head to Mayo next week and see their MG team. One additional thing I noticed every morning, while actively coughing I would wake up and feel like someone had me in a big bear hug. I had lots of tightness around my ribcage. I am still very short of breath and tired.
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In preparation for my IVIG this morning, I tested last night and the results were Positive.
Contacted my Neuro and PCP to advise and see how I can get this treatment. I understand that many can test positive for up to 90 days.
I feel no symptoms other than some coughing.
Scott
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Still testing Positive for Covid.
Bit of a cough and runny nose. No temp.
Still quarantined.
I must test Negative two times in 24 hours before I can reschedule my IVIG.
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I got covid after attending a wedding stupidly without a mask. I had fairly mild symptoms but it hit me in the throat area mostly. Very bad dry Cough for a few days and pretty bad covid laryngitis and a mild sore throat. Doctors prescribed some steroid nasal spray and cough meds. I was negative in 8 days but very tired for two weeks.  I only had one booster shot last November so I didn’t have much protection left.  I will get the new booster later  in the fall.
it did not kick up any MG symptoms thankfully because viral illness in the past caused Mg symptoms . Â I am antibody positive MG for five years now. -
Had my 2nd Negative test in 24 hours on Friday.
Called to reschedule my IVIG – That’s another story.
Scott
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I had 4 vaccinations and I wasn’t very sick. I immediately went on the antiviral Lagevrio which helped. But after it was over I was tired; polymyalgia rheumatica was triggered(it had previously come on after a bad ‘flu), then a few weeks later breathlessness and pneumonia. I don’t know how much blame to put on Covid. It’s now 2 months since I tested Covid clear but I am still very achey and not sleeping well due to pain. The MG is the least of it. Only 4 x 10 mgs of Mestinon daily.
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I tested positive two days after returning from two weeks of work in Europe. Out of nowhere I felt like a truck had backed over me. I did take paxlovid and felt better within hours. Tired and sore for about a week or two then back to normal mg life again.
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