In Body

Myasthenia Gravis Crisis

If you have the neuro-muscular autoimmune disease Myasthenia Gravis (or MG which translates from Latin to grave muscle weakness) like me you know that sometimes things just don’t go as planned. Some days you are on your game, the next you are in a Myasthenia Gravis crisis.

I had one of those moments yesterday. I woke up, ran some errands, went about my day as usual then sat down for dinner. I could feel myself getting weaker throughout the day but thought I could negotiate my way out of it. The conversation in my head went like this:

Me: You’re ok. Just finish dinner and you can lay down.

My Body: I’m not ok!!! I’m not ok!!! We are going to die right here in the middle of the fried rice. Abort! Abort! All hands on deck!

Me: Calm down body. You are going to be fine. You are just tired and we waited to long to eat. Let me finish dinner and we will go to bed early.

My Body: NO!!!! I’m melting! We are starting to have a problem breathing and we will probably have to go to the hospital or maybe we will faint again. Oh God, I think we are going to faint! I hate fainting! Wait, I think we just lost our legs and the arms are close behind. Save yourself! This shit is getting real right now! We are going down!!!!!!

If you haven’t noticed, my body is a bit of an alarmist. Although it has plenty of history to warrant PTSD, we have been though a lot over the past 7 years. It had been a long time since I’d had a complete system failure so I guess I was due. I had missed many red flags that it was coming.

My MG crisis started with a swirly, dizzy feeling in me head. Next came the feeling that I couldn’t take in a full breath. I decided to abandon my chow mien and head upstairs to bed but couldn’t get out of my chair. As my husband was helping me up my arms gave out as well and I started falling to the floor. My daughter was close by and caught me and helped her dad get me to the couch. By then I was covered in sweat and unable to breathe. After a few minutes the three of us made it over to the stairs (side note: my next house will most definitely be a one story). I butt bumped up the stairs (sat down on one step and went up backwards on my butt, pulling each leg up as I went) with my husband pulling me up each step until I made it to the top. Then did an army crawl to the bed where he lifted me in.

Devastating for them. Humiliating for me. I will probably have to put my daughter through therapy.

Here’s the thing. It is what it is. If you haven’t been though a crisis before, good for you. If you have, you know what I’m talking about.

Although not all Myasthenia Gravis crisis are created equal, there are a few things we should all do when one hits. Below are a few tips to keep you safe and sane:

  1. Don’t panic – If you feel yourself going off the deep end don’t make it worse by panicking. Stress sends cortisol into your blood stream which amps up your immune response even more. It sounds counter intuitive but lean into your crisis like a karate master. Tell yourself, “OK, this is unfortunate, but I will be fine tomorrow so let’s just write this off as part of the ride and deal with what is happening now, no projections into the future.” Staying present will help you stay a little calmer. Don’t think about all the things that you may miss later because of the crash.
  2. Don’t be stubborn – When I’m feeling weaker than normal or should be canceling something to rest, I like to push through it and keep going. It has NEVER served me well. If you feel like you should be resting or that you aren’t very stable sit down and do it! Sometimes it only takes 20 minutes or so to get back to your A game. Pushing though only makes you and everyone around you miserable, just ask my family.
  3. Have your medical information up to date – Do you have a medical card? Bracelet? App on your phone stating your condition and all your insurance and doctor information? If not do it now. And by now, I mean right after you finish reading this post. Don’t wait or put it on your to do list because you never know when you will need it. I passed out once at a Farmer’s Market my myself and that little app on my iPhone kept me safe and the people around me informed. By the time I woke up in the paramedic truck (so embarrassing), I was already on the way to the hospital with my doctor standing by. First responders know where to look on your phone and it doesn’t require a security code to get the information they need. Make sure you have all the necessary information ready for anyone that may need it so if you go in to crisis, you have your back.
  4. Ask for support and be grateful – I am not a fan of asking for help but when I know things aren’t looking good for me I’m not afraid to ask family, friends, and sometimes total strangers for help. I have never been turned down so far. Don’t be a hero. If you need help, ask. If you get it say thank you to those responding. It’s really easy and I’ve found that people are overly generous with their care. I’ve also tried to offer help to someone that I knew was struggling only to be met with a rude, aggressive response. Don’t do that. People are only trying to be kind. Also, sharing in a common humiliation makes it not so humiliating. Join a support group of people who truly understand and can laugh and cry with you after you are done with your crisis. We’ve all had some pretty bad ones (like passing out in a Farmers Market and having the hummus lady try to give you mouth to mouth). Sharing common experiences makes us all feel a little less alone in our struggles. If you don’t know where to look and want an empowering group of folks that never give up their battle, join my private FaceBook support group the Wellness Warrior Tribe. We get it.
  5. Prevention is the best treatment – After many years of dealing health issues, we can get a little sloppy. Make sure you are taking care of yourself all the time, not just when you feel unwell. Be mindful of your diet and self care on a regular basis. It’s like being on a plane during an emergency situation. You put the oxygen mask on you first before you put it on anyone else. Taking care of yourself on the daily isn’t a luxury, it’s a necessity. If you don’t, you won’t be good to anyone else.

Do you have any recommendations of things you do during a crisis? I would love to hear about them in the comments section. Also, I will be starting my three part series on healing MG naturally. Subscribe to my newsletter so you don’t miss out. 

Recommended Posts
Showing 19 comments
  • Laurie

    I’ve been through several crises, and caught myself taking deep breaths while reading this. Thanks for the reminders to take care.

    • Krista George

      My daughter Sunny has MG, and is also mentally disabled.We kept telling her neurologist something was wrong, and she was choking all the time.She ended losing so much weight she looked like a skeleton.Her neurologist thought she was lying. I was actually scared we would lose her, and finally switched doctors and found out she had MG.She is doing so much better, but her balance is really bad.I would really like to see if she could have help with that.She falls alot.

      • Hi Laurie. Remind me to punch your old neuro in the nose one day. I too have issues with balance sometimes. I’ve found physical therapy has worked wonders. Also, braincore work (rewiring the brain to connect to the muscles). Good luck with everything. I will be praying for Sunny.

  • Ann

    Lisa-
    Thank you so much for such a valuable piece of writing. I am so glad you are okay. This post can help not only people with MG, but people with ALS, MS, Cystic Fibrosis, asthma. I really appreciate you so much.

  • Sandra Sumter

    I too have MG I’m now dealing with eye weakness. I try to eat healthy & do the green smoothie most of the time but always seem to go back to unhealthy eating. I feel so much better with the smoothie & healthy eating. I got to get more WILL POWER because the struggle is REAL.Thank You Kindly for sharing your story.

    • I too slip up sometimes but always come back to healthy eating because it isn’t about willpower, it’s about being able to live the life you deserve. If that means ditching the fries and upping the green drinks so be it!

      • Judith Rightley

        What is the Green Drink? Are there certain foods I should be eating or not be eating because of MG?

        • Hi!
          A green drink is fresh juice filled with fruits and green veggies. There are a million combinations you can put in a blender or juicer to make them. MG is triggered by inflammation in the body as well as MSG (which I forgot and was eating in my Chinese food), and other things like iodine, chlorine, and many cleaning chemicals. If you want more insight, please join my private Wellness Warrior Tribe on FaceBook. I hope that helps. https://www.facebook.com/groups/WWarriortribe/

          • Colette

            I look forward to this info as I am clueless to eating differently to help my mg.

  • Christine

    The MSG in Chinese food is a huge MG enemy.
    The sweet dishes (sweet N sour, Plum BBQ etc) are usually free of MSG but chow mein etc can push you over the edge if you are there.

  • Colette

    I am in situation that is unavoidable, but is the highest of stress and full of raw emotions😕. My mother is in stage 4 lung cancer, she has months to live, she lives up north and I and all my siblings(2) live down south,my mother has never been a easy person to deal with or be raised by and so this make the situation even more difficult,I have been told to basically go along with her wishes and whims (the norm)but I’m not capable of this request at all times,at time I feel I’m being selfish(I’m not the one dying)but I don’t want to be in a bad place(health wise) pleasing her, I have requested from my pcp depression meds and sleeping aid meds to help head off some of my impending doom, but I can only take the lowest dosage..as time goes on my sleeping is not so great and my emotions are getting harder to control I see myself spiraling and I feel so helpless.. My neurologist sucks,and I don’t have the ability to change doctors(county assistance, gotta love it)this issue can’t be explained to my family or friends because they don’t fully understand but want to help, blah blah blah blah,I’m the oldest and my mother is not married so there will be more things down the road to handle that will become overwhelming, I’m here now to try and settle some of these things but my mom doesn’t have the same plans, I want to walk away but I can’t 😢HELP!

    • Breathe Colette. That’s a lot to take on. You may want to find someone that can help you cope with all the stress you are under. We all need a little help every now and then and this sounds like the time. I wish you well and pray for your mother.

  • Robert

    hello I’m currently dealing with mg for past 2 yrs . I’m also currently researching and finding of ways to get off meds , be symptom free and possibly curing . Deff clean eating is the number one solution to help the body heal itself . . Non inflamation diet , gaps diet, plant base diet etc. Also if you can some how try to find out what actually triggered your disease that is also a big help to give you and idea where to start . YouTube dr. Mark hyman and others for sum info . Like I stated I’m researching and just trying to heal myself faster and not depend on the steroids etc forever . Time and faith .. Hope this info gives sum kind of hope to not give up .

    • I would love to hear more about your findings Robert! Have you joined my private Wellness Warrior Tribe on Facebook yet? That way we can chat.

  • Emma Griffiths

    I was one of ten children with myasthenia in the UK before it started to become recognised, so I have lived with this shitty illness for over 15 years now! I know lots of tips and tricks to disguise my myasthenia – almost to the point I wish I wasn’t so good at covering it up!!
    I know this is crazy but when my MG is so bad to the point it affects my speech and I can feel my breaths getting really weak, I get an ice lolly and hold it in my mouth and it actually helps me speak properly again, not sure how it triggers the muscle working again but it definitely helps! I also plan all my weeks subconsciously, always being mindful that if I want to go out with the girls, I won’t plan anything for the next day so I can let my body relax. I am nearly vegan ( every thing but cheese…. If I can get a great replacement then I’ll be 100% ) and I know that my diet makes an incredible difference to how my body is feeling and I always suppliment with b12 and high quality omegas and magnesium as I find this beneficial to my mg.

    • Lisa Douthit Wellness Warrior

      Thank you for your comments, Emma. You are one of 10 children and you all have mg? I do many of those tips as well but be careful with the magnesium as I have been told it is a MG trigger. I would to invite you to my private FaceBook group the Wellness Warrior Tribe. There are lots of us with MG there. Here is the link:https://www.facebook.com/groups/WWarriortribe/

  • Liz

    Hello
    I’m 18 and I’ve been diagnossed with MG just a couple of months ago and have seizures all the time. The big problem is that I also have athma, SLE (lupus), liddle syndrome and a couple of other diseases that cause seizures. I never know when feeling bad will turn into a seizure and if I know before the seizure starts I’m often too late to discover what kind of seizure it is. Sites like this really help and I want to thank you for giving tips. If I put all the tips for all the diseases together I might be able to live at least a week without a seizure.

Contact Me

I'm not around right now. But you can send me an email and I'll get back to you, asap.

Not readable? Change text.

Start typing and press Enter to search