One of the things that we learn about myasthenia gravis (MG) is that it’s not considered terminal like cancer. However, when you have MG there’s the possibility of going into myasthenia gravis crisis which is life-threatening if not treated quickly and properly.
Life with myasthenia gravis (MG) is very up and down. One minute I’m fine and the next I’m not. Things can easily go from bad to worse and before you know it, you’re in the middle of a myasthenia gravis crisis.
The Difference Between an MG Flare and an MG Crisis
An MG flare is a worsening of normal symptoms such as difficulty swallowing, ptosis, or limb weakness. MG flares vary from patient to patient.
An MG Crisis on the other hand is much more life-threatening. It’s when the respiratory muscles get too weak and you’re unable to breathe on your own. In such cases, you will be put on a ventilator or BiPAP to assist.
One of the ways I like to think of my MG is with a radio. Some days, the radio is on low. The symptoms are barely even noticeable. Good days.
Other days, there are flare ups and the volume turns up a few notches. Can you hear me now?
And then there are days when the volume is on max and you can barely function because the sound is deafening and will cause serious damage. That my friends is a myasthenia gravis crisis.
What happens during a myasthenic crisis
In the most simplest explanation, a myasthenic crisis is a life-threatening condition that affects breathing and requires immediate treatment. This happens when the respiratory muscles get too weak to move enough air in and out of the lungs.
What can trigger a myasthenia gravis crisis
Myasthenia gravis crisis can be brought on by a number of things to include:
How long does a myasthenia gravis crisis last
It honestly varies based on the severity of your crisis and how you body is responding to the treatment administered. However, if you require endotracheal intubation it’s an estimated 2 weeks in the hospital.
How is a myasthenia gravis crisis treated
Contact your doctor and go to the hospital!!
If you get to the hospital early enough they will just monitor your breathing and assess the steps to bring you out of the crisis. Most often respiratory failure will require intubation and mechanical ventilation.
As scary as the thought of being on a ventilator is, the use of the machine has improved the mortality rate associated with myasthenic crisis.
In addition, they often provide IVIg or plasma exchange during your hospital visit.
My MG Crisis Story
As I’ve mentioned time and time again, that first summer after my diagnosis was brutal. I was in denial and not taking care of myself properly- still living life as if nothing was wrong.
After I found my specialist, he began a very aggressive treatment plan but my myasthenia gravis was stubborn. Each week my symptoms became worse and worse.
One day he told me, listen you have to slow down and rest or I’ll going to admit you to the hospital for an extended stay where I know you’ll be safe. I don’t know if I took him seriously or not but I heard him.
Scared as I was I started to pull back on my activities. Work and home were basically my approved destinations but it wasn’t enough.
On the short walk from my car to my front door, my breathing was so belabored. It felt like I couldn’t catch a full breathe- very shallow and weak.
I went straight to the couch to lay down and catch my breath. But after hours on the couch, I still couldn’t breathe.
I waited until about 3 am and called my mom to tell her I was driving myself to the ER. They immediately admitted me and gave me oxygen. I didn’t have to get on a ventilator. It was so scary.
They kept me for two days and then sent me home. I was just thankful I made it.
4 Tips for Dealing with a Myasthenia Gravis Crisis
Unfortunately, there is no way to guarantee that you will never have a myasthenic crisis. It just comes with the territory. If you are faced with one, here are a few tips to help ease the strain:
1. Don’t panic.
Stress is one of the main triggers for my symptoms. This is something I feel holds true for most with chronic illnesses.
Stress releases cortisol into your body which amps up your immune response even more. Basically stressing is making it worse. So take a few moments to gather yourself and react.
2. Get in-tune with your body.
I know yall are tired of hearing me talk about meditation but I’ma say it again. Slow down and turn the focus inward.
Our bodies are constantly giving us signals about what’s happening. We just need to listen. A daily body scan will do wonders. Take a second and see what feels “off” – the legs, the vision, the neck?
Knowing what’s going on internally can help you articulate what needs to be done to assist you.
3. Keep your medical info on point.
By on point, I mean up to date and easily accessible. Do you have a medical card? Bracelet? App on your phone stating your condition and all your insurance and doctor information? If not, I’d encourage you to get on that ASAP.
Why? It makes the process of getting help easier. You never know when or where a myasthenia gravis crisis may occur. You may collapse or become unconscious.
If you’re unconscious, you won’t be able to tell the emergency response team who you are, what you have and what medications you’re on. This is where your medical info comes in handy.
4. Ask for help.
One of the major things I struggled with when I was diagnosed was asking for help. I felt like it made me weak. So even when I was feeling horrible I denied it.
I can recall being at work and struggling to breathe. Finally, I told my supervisor that I wasn’t feeling well and she asked if I needed anything.
I said no and drove myself to the hospital where they kept me for 3 days because I was in a myasthenic crisis.
Please don’t be like me. Ask for help. A Myasthenia Gravis crisis is serious business. Thankfully I survived some scary moments but it could have gone another way.
How do you prevent myasthenia gravis crisis
Honestly, you can’t prevent it but you can do your part to manage your myasthenia crisis. Little things like practicing self-care, taking your medications on schedule, seeking medical attention at the first sign of respiratory issues instead of waiting for it to worsen.