By Alexandria Edwards, as told to Keri Wiginton
I have severe, refractory MG. I’m 25 now. But my symptoms started when I was 15. I was at school, and my speech started to slur. My legs collapsed. I felt really weak. They thought maybe I had a stroke. One doctor guessed it might be migraines.
I actually had myasthenia gravis. But I didn’t learn about my condition, or get the right treatment, until several years later.
How Was I Diagnosed With Myasthenia Gravis (MG)?
My MG symptoms came and went all through my late teens and early 20s. I dealt with episodes of slurred speech, droopy eyes, double vision, and muscle weakness. I would drop things randomly or fall down. I thought I was just clumsy.
Things got a lot worse when I was 22. I started to have trouble chewing, swallowing, and breathing. One time my voice completely disappeared. I went to the emergency room, but no one knew what was going on. They told me to follow up with my regular doctor.
My primary care physician (PCP) suspected MG, but my antibody tests came up negative at the time. I left without clear answers.
A month later, I ended up back in the hospital.
It was the day after Thanksgiving. I went to the bathroom and got stuck on the toilet. My legs wouldn’t work. I struggled to breathe. My head dropped, and the slurred speech came back. I had full body weakness.
My family rushed me to the ER. We learned I was in a myasthenia gravis exacerbation. I started taking a low dose of a drug that helps nerves communicate with muscles. They also put me on a steroid that suppresses my immune system.
I thought everything would be fine after that. But no one explained how I needed to change my daily life to live with MG. Over the next year, there were more trips to the ER. I even went into respiratory failure and had my first MG crisis.
But eventually, I found good neuromuscular specialists who’ve helped me form a long-term plan.
What Do My Mornings Look Like?
I wake up at 8 a.m. and take my first dose of medication. I can’t get out of bed and function without it. I lay in bed for about an hour while I wait for it to kick in. Then I’ll get up and make myself coffee and breakfast. I love french fries and eggs Benedict with a side of hash browns.
I’ll take the rest of my pills when I eat. They include another drug that suppresses my immune system.
After breakfast, I’ll get dressed. That can be tiring. I’ll need to rest after. When I feel up to it, I’ll watch my 5-month-old niece so my mom can make her breakfast. My niece weighs 15 pounds, so I can’t hold her for very long. But I play with her the best I can.
I like to take a walk outside sometime in the morning, maybe to the mailbox. But only if it’s cool enough. My symptoms flare in the heat.
Then I’ll take some time to go on Facebook and check MG community groups. I like to offer helpful advice when I can. For example, people may have problems getting diagnosed or trouble with their IVIg treatment. That’s an infusion I get through a vein in my arm. It affects how my antibodies work.
What Is My Afternoon Schedule?
I take my medication every 3 1/2 hours, which means it’s time for the second dose around 11:30 a.m. Then I eat lunch. I’ll make it myself if I’m not too tired. If I’m not up for it, my mom will help. My energy depends on where I’m at in my IVIg cycle.
On a good day, I can eat pretty much whatever I want. But that doesn’t include really crunchy things. And big burgers or tough steaks aren’t a part of my meal plan.
But sometimes I can’t swallow very well. On those days I’ll make soup or something soft. Or I’ll cut everything up into really small pieces.
If I can’t swallow at all -- that happens about once a day -- I’ll get all of my nutrition and meds through a feeding tube. I had one surgically put in through my stomach. I need it because even with treatment, the swallow issue has never fully resolved.
I might go shopping in the afternoon. If I do, I’ll bring my walker. I can walk short distances without a break, like to the mailbox, but I can’t stroll around a grocery store for a long time without some help.
And if I have to go to something like an all-day graduation ceremony, I’ll take my wheelchair.
Where Do I Spend My Time?
I’m at home a lot, but there’s plenty for me to do. I’m very close with my family. We do a lot of different things together. We watch TV, play board games, or play video games.
Plus, I help care for my niece; babies take up a lot of time.
My days aren’t spent at a job. But I did go to cosmetology school before my symptoms got really bad. I’m big into skin care and self-care. I like to experiment with hair and face treatments. I do that for my mom, too. That’s my love language and one way I show her appreciation.
What Tips and Tools Are Helpful for Living With MG?
I modify a lot of my daily tasks. But I’m good at adapting.
Take cooking, for example. It’s fun, and I use it as a creative outlet. But it helps to make meals in stages. I’ll do the prep and put everything in the fridge. The actual cooking comes later, and I’ll lean on my walker or rest in a chair by the stove.
Then there’s bathing. I think most people jump in the shower and think nothing of it. But it’s not that simple for me. It takes a lot of energy to get clean.
But I find showers really relaxing, especially if I’m feeling stressed or down. My shower chair has made all the difference. Before, I had to sit in the tub and ask for help when I needed to get out.
If you have MG, don’t be afraid to get tools that’ll help you get through your day.
These things aren’t a sign you’re giving up. You’re just taking control of your life to make things a little easier.
Every Day Is Different
I have a flare-up quite often. While every part of my treatment plays a role in keeping me well, medication hasn’t cured my disease.
I may always need to bookend activities with breaks. But it’s a good day whenever I can move around and get things done. On a bad day, I’m completely bedbound. Serious flares like that usually don’t get better until I get my infusions. I’m very lucky to get those at home about every 2 weeks.
MG is a serious illness. But don’t assume we can’t take part in fun things. Invite us out. We may feel well enough to go. I know I appreciate the choice of whether to say yes or no. Sometimes I may surprise you.
Alexandria Edwards, myasthenia gravis advocate.
Myasthenia Gravis Foundation of America: “Intravenous Immunoglobin (IVIg).”