Sponsored: Living with Generalized MG? Get resources a free PopSocket here.

caret icon Back to all discussions

MG Crisis-What Triggered Yours?

Have you had an MG crisis (https://myasthenia-gravis.com/crisis)? If yes, do you have an idea of what triggered it?

  1. My crisis occurred in March and extended into April of2023. I overdosed on Mestinon in late February. That was the beginning of a total ocular and generalized MG crisis. I needed a thymectomy but was too sick to have surgery in March. So I began with plasma pheresis. My surgery was rescheduled for April 18 . Before surgery I went into the hospital for a week and had seven rounds of plasma pheresis. I was to have two more rounds as an out patient in a cancer center. My port had been removed so the tech tried to give me Pheresis in my arms. That was a huge mistake as my veins kept collapsing. After two hours of trying I began to go into crisis with my throat collapsing. I was sent to the ER where I was sent to the ICU. I couldn’t lay flat without my airway closing. Finally, it closed completely while sitting up. I was resuscitated, intubated and put on a ventilator. While on the vent I had two more pheresis , and chest surgery was done while ventilated. The vent was removed 12 days later. I was released from the hospital to go home on April 18. I had home therapy for a month. I began Vyvgart infusions weekly. I have completed five rounds of infusions. That is 20 infusions over several months. The thymectomy was successful with the removal of a cancerous tumor. I’ve regained strength and stamina, I can eat , chew, swallow and walk. January 10 I go in for hip replacement surgery. That will be an adventure all its own.

    1. Hey! It means a lot that you spent the time to formulate such an in-depth response!

      Sending compassion your way, knowing how overwhelming and complex a crisis is to endure. And then to hear your throat experience! Wow, I can't even imagine how terrifying that must have been.

      It is fantastic to hear you are currently doing better! Are there any adjustments your surgery team plans to make in January to accommodate your MG? People are always asking about surgery with MG
      Jodi, Team Member

  2. Mine was very recent, on December 8th I started to notice chest pains, heavy and twitchy eyes and feeling like I couldn't get enough air.
    I had to stay in the hospital for one night on the heart monitor which was absolutely terrifying.
    Which ended up happening was, when they upped my mestinon doses I overdosed on it :/, I have another hospital appointment next year so I have to keep taking them in a small doses until I have a replacement.
    It was such a scary experience but it did diagnosis me further and they found out I have MG Musk.
    -Fleur

    1. Are you currently on any other treatments? And you said you're still taking the mestinon, correct? Have you had any more problems in the past two weeks?
      Jodi, Team Member

    2. hi, yes I'm still taking my mestinon around 2 times a day, I have to until they find a alternative medication that works for me. I still have on-goinging hospital visits for other complaints I have body wise.
      About if it got the couple of weeks the answer is yes, I haven't been able to do a lot, I'm struggling with chest pains still and heart rate spikes.
      Honestly mostly slept trough Christmas because I got too exhausted.
      -fleur

  3. In November, near Thanksgiving, I began to have pain at my sternum which continued for several days. I had had angina before (which had lasted a matter of several minutes), but it never lasted this long. I called a nurse who told me to go to the ER where they did a lot of tests and offered to let me go home or stay overnight to do a stress test. I opted to stay and get the final test done. All tests showed no heart trouble, clear arteries, strong heart rate. The doctor said it might be myasthenia gravis crisis as she had no other explanation. I went home, but the weakness and extreme fatigue continued for a couple more weeks, letting up eventually. I was home for Thanksgiving and it was a no-stress dinner with just my husband and me, no guests. I have no idea what triggered it, although I certainly have plenty of stress in my life. Still learning about MG.

    1. I bet that was highly alarming and scary! Sending much compassion and good vibes your way! It is great to hear that the crisis has since halted. Do you have any relaxing methods or stress-coping techniques that you incorporate into your day?
      Jodi, Team Member

  4. my worst MG crisis was triggered by something I ate. It was orientation for my second day of school, so they provided lunch for us. It was a quinoa bowl with sweet potatoes, which sounds healthy, but extremely oily. It made me really sick and gave me severe abdominal pain. Then the pain spread all over my face and body and triggered my MG symptoms as well. I couldn't breathe, talk or move anything and ended up in the ICU that same day. I have to be super careful with food because it always ends up triggering my MG symptoms.

    1. Very interesting! Thanks for sharing, Brianna. I also had my crisis start after eating, a salad specifically. However, I also had started Plaquenil a month prior, which is known to be a potential MG trigger. I've always wondered if the food triggered the crisis vs the ocular symptoms I had for a month
      Jodi, Team Member

Please read our rules before posting.