January 2024 - How we got here



Vanessa receives IVIG treatment every four weeks for her Myasthenia Gravis (see here to learn what MG is). Usually a day or so after treatment Vanessa's strength bounces back and lasts another 3-4 weeks until the next treatment. During this 3-4 weeks, her strength decreases gradually. By three weeks after IVIG, she's ready for another treatment. The last few treatments this "bounce" back time has been less and less. She last had IVIG on Sunday, Jan 14 and didn't get a bounce. We've been monitoring her strength levels daily for the last week and her breathing. She's been in a myasthenic crisis twice before, most recently last July 2023 where she was admitted for PLEX. However, last July her breathing was significantly worse than this time. We both recognized then that we waited too long to seek emergency treatment and agreed not to do that again. While Vanessa wasn't having as much difficulty breathing this time, her speech was harder and more slurred than normal and earlier in the day.

Vanessa wrote her neurologist on Tuesday this week and the neuro saw the message on Thursday. After seeing the message, the neuro had her office quickly arrange a video conference appointment with Vanessa. At the time, we were not planning on going into the hospital and thought we'd continue to monitor Vanessa at home, but the neurologist had little confidence that Vanessa's condition would improve. The danger is that while Vanessa's speech is what was primarily impacted now, her breathing could quickly become a problem. The neurologist strongly advised us to go to the emergency room to be admitted for PLEX. So we agreed and headed in. 

Comments

  1. AnonymousJanuary 27, 2024 at 8:24 AM

    Thank you for doing this Ryan. I'm praying it's a quick stay.

    ReplyDelete

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