Here We Go Again
Last updated: May 2023
I was diagnosed with MG in March of 2021 but knowing what I know now, I probably had this disease years before.
My first crisis
When I was first diagnosed, I had no idea of what a crisis was let alone all the varied symptoms. My neurologist is well educated with MG, in fact, he is on a research team that developed one of the newest therapy drugs. His recommended treatment worked great for about a year and a half.
In fact, I didn't believe I really had MG till my crisis. 10 days in the hospital, with 3 in the ICU was about all the education I wanted.
A recent flare-up
I have been symptom-free for 9 full months after my MG crisis of Memorial Day weekend of 2022, and I'm not sure what caused this current March/April 2023 "flare" or rapid reversal. But the telltale signs started popping up! Difficulty swallowing, then chewing, sore eyes with out-of-focus vision - luckily, no breathing issue this time so I think we responded early enough. We were scheduled to travel to Europe in a week but those plans were quickly canceled!
I went to the ER after 3 days of mild symptoms to avoid a possible crisis. I was treated with a regiment of 3 days of infusions plus my regular regime of Mestinon, Prednisone, and CellCept. That was 10 days ago and I think I am limping back to "normal" Whatever that may look like.
My scariest symptom
The hardest symptom to deal with is swallowing. I am afraid when I wake up to drink fluids because of the choking, coughing, and sneezing, did I mention the choking that is happening? Taking my morning meds takes 30 minutes at best, then trying to relax my body and mind takes another hour. Eating is a workout!
Thankful for my support systems
My wife is my best advocate and a nurse of 43 years but this is taking a toll on her also. She wants to fix this but can't. I want to fight this but it is a tough battle. My faith in God and His Son gives me the daily strength I need. The meds and these blogs give me to support also.
I am saddened to read some of the accounts of MG posted but it also humbles me to know that I don't have it as bad as some. Advice and conversation are welcomed!
How helpful is following a daily routine for managing your MG?
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