People have been asking me, "Can you die from myasthenia gravis?" Most of these people are surfing the internet at 3:19 in the morning. They were just diagnosed with MG and are looking for someone who knows what they are going through. If this is you, make yourself a cup of cocoa and have a seat. I've had MG for 15 years. I'm still here. In 15 years chances are you'll still be here, too. Here's a hug.
The answer to the question, "Can you die from myasthenia gravis?" is yes, but probably not. It's the same answer to the question, "Can you die from driving on the freeway?" Yes, but probably not.
The four ways myasthenia gravis can be fatal are:
1.) Severe respiratory weakness
4.) Medication side-effects
Because people are asking about it, I'll be blogging about these one at a time over the next few days. Let's start with the scary one: respiratory failure.
Severe respiratory weakness in myasthenia gravis can happen. This is called a myasthenic crisis and it can be deadly without treatment. A crisis happens when MG attacks the muscles involved in breathing. It feels like someone covered your mouth and nose with their hand and you just can't breathe in.
My last crisis was in 2005. I blacked out while practicing the cello. Darn you Popper Etude Number 36! That piece of music is one of the funnest things to play on the cello, but I got out of breath playing it. I'm lucky I didn't drop my cello.
I was so weak I couldn't cry out that I needed help. I couldn't walk from the practice room to the living room, so I crawled. My family called an ambulance and I spent a few days in the hospital. It was no fun at all.
But, my crisis didn't come out of nowhere. In the weeks leading up to it, my MG symptoms increased dramatically. Only, I was too dumb to know where I was headed. MG symptoms fluctuate. Some days are better than others. What I learned to look for was a pattern. Bad days, followed by worse days, followed by bedridden days, are something I pay attention to. If MG is sliding, I take that as a warning sign.
What causes a crisis? Infections can trigger them, especially respiratory infections. Coughing makes chest muscles weaker. So do fevers. Hot weather can weaken muscles. Surgery, trauma (including emotional trauma) can weaken breathing muscles.
If you are afraid of a crisis, and can't sleep right now, here's a suggestion. Learn how MG "normally" feels in your body, so you can know if something changed. You don't have to be paranoid, but aware. Think of monitoring your MG like monitoring your driving on a freeway. You know how the freeway is supposed to feel. But, sometimes there is bad weather, or that crazy person texting, or that lunatic in the truck. Signaling left and getting into the right lane? Are you insane? Driving
closer to me doesn't make my car go faster, you know. What are you a snow
plow? Get off my tail, buddy. Look at this guy. The long thin pedal is the accelerator you jerk! The brake pedal is not the clutch. Quit riding it. Hey you, with the bumper sticker, forget world peace. Visualize using your turn signal! That it'd be the change I wish to see in the world.
Wait. What were we talking about? Oh yeah. Sorry. Tangent got lose again. Here Tangent. Here boy. Back into your kennel. Good Tangent.
With MG you know how you feel on a "normal" day. If you feel worse than you have ever felt, if breathing feels like someone stuck a plastic bag over your face, if you feel like crawling instead of walking, call an ambulance. Don't, ahem, ignore all this and do something dumb like, oh I dunno... practice the cello. Darn you Popper No. 36.