Ever watch a movie and catch a small detail that hints at what’s coming next? A character says, “I have a bad feeling,” and then the story unfolds exactly that way. That’s foreshadowing. And honestly, it’s the best way I can describe my Myasthenia Gravis (MG) diagnosis story, full of foreshadowing, irony, and a little bit of luck. I want to share my MG journey, from diagnosis to treatment, and what daily life looks like for me now with a chronic illness.
This blog post was made in partnership with NOWINCLUDED, powered by Acclinate. I was paid for my time, but everything I share here reflects my honest experience.
Life Before MG
At the beginning of 2017, I was attending Georgia State University, in the second semester of my junior year, and everything felt like an adventure full of possibilities. I woke up at 5 a.m. most mornings to commute to school, clinical rotations at the hospital, or work. I was the definition of booked and busy. Not only was I studying to become a Respiratory Therapist, but I was also working part-time as a lab assistant, running an on-campus organization, tutoring students, and pledging. My life moved at a fast pace. I survived on just a few hours of sleep, a poor diet, and way too much caffeine. But something was changing… I didn’t know it yet.
The Foreshadowing
Very few people know how I ended up choosing Respiratory Therapy as a career. Honestly, I stumbled into it. After being waitlisted and then denied admission to the nursing program, I had to pivot quickly and find a new direction for my studies. That’s how I landed on Respiratory Therapy, and over time, I grew to love it.
I remember sitting in my Pulmonary Disease lecture one random Tuesday (or was it Thursday?), half-listening to the professor. We were learning about neuromuscular disorders when he turned on a video that caught my attention. A woman had just given birth and lost the ability to move her voluntary muscles; she had Myasthenia Gravis. I remember thinking to myself, “I would never want something like that.” Little did I know that moment was quietly foreshadowing my own journey.
The Diagnosis
A few months went by, and I began noticing strange changes in my face. By the end of long days, I looked like I had a stroke: heavy eyelids, double vision, and speech so slurred that it was barely understandable.
Read more about symptoms of MG here
But by the next morning, everything would return to normal. I convinced myself I was just out of shape. One morning, I went for a run, and by the time I made it back home, I couldn’t even climb my stairs. That’s when I decided it was time to see a doctor.
Sitting in my primary care doctor’s office, I gave a full account of what I had been experiencing. I explained how my legs felt heavy at the end of the day, like I had to drag them to move. I told her I couldn’t chew solid foods and that I sometimes saw double road signs while driving. She listened intently and documented everything. I remember saying, “I learned about this disease called Myasthenia Gravis in school… it sounds a lot like that, right?”
She reassured me that I was too young and didn’t fit the typical profile for such a rare condition, but she ordered bloodwork and several tests, including screenings for lupus, MS, and MG. A few weeks went by, and I eventually made my way back to Kaiser Permanente and sat in my PCP’s office yet again. In April 2017, my doctor told me I tested positive for ACHR+ Myasthenia Gravis. I created Ashley’s Anatomy shortly after realizing there wasn’t much information on Black women with MG. I wanted to create a space to raise awareness and put a face to the rare disease so people can see what invisible illness looks like.
Initial Treatments & The Fight to Stabilize
The first few months after my diagnosis were intense. I saw a neurologist who confirmed my MG with an EMG test. My initial medication regimen was high-dose steroids, mestinon, azathioprine, and IVIG infusions every two weeks. Trying to maintain my pre-MG pace led to multiple hospital visits, and by late 2017, my symptoms were out of control.
The first few years were the hardest: ER visits, treatment days, blown veins, and hospital admissions were my life. I developed an IVIG allergy, and emergency plasmapheresis treatments were my only other option. I hated it, especially because it guaranteed at least 10 days in the hospital.
Stubborn as ever, I refused to withdraw from school, and I decided it was a good time to join a sorority. I remember introducing myself to the room full of ladies and giving my one interesting fact. I said, “ I’m Ashley, (can’t remember the rest)…I was just diagnosed with a rare neuromuscular autoimmune disorder”. I instantly felt like I’d overshared and moved to sit down when a graduate chapter member replied, “What did you say you had? Myasthenia Gravis?” Would you believe she said she had it too? Some people go their whole lives without meeting someone else with it. She became a huge part of helping me navigate my beginning with MG.
During ICU clinical rotations, I ironically cared for a patient with MG and shared my experience with my classmates. I went for a reveal vibe during my Final Case Study. In December of 2017, I underwent a thymectomy–a surgical procedure that removes the thymus gland. From 2018 to about 2023, I took Rituxan infusions. During this period, there were no FDA-approved medications for treating MG.
Thymectomy
In people with Myasthenia Gravis (MG), the thymus can sometimes contribute to the production of antibodies that interfere with communication between nerves and muscles. The goal was to remove my thymus and reduce the problematic antibodies, which often helps improve MG symptoms. With that also came reduced need for medications and a decrease in disease progression. I had an invasive thymectomy, meaning my chest was opened, and I have a scar that goes down the center of my chest (that looks great by the way, Shoutout to my Cardiothoracic Surgeon). Needless to say, my procedure was painful, and recovery took several months.
I also had 2 procedures after my thymectomy surgery to repair my vocal cords. I had a hard time talking weeks after I’d been intubated. The official diagnosis was paralyzed vocal cords or something. My words were breathy and weak. I believe I had silicone injected into my cords to help.
Living with MG Now
Today, my life looks very different from what I imagined back in 2017. My symptoms are managed, my quality of life has improved, and I feel comfortable in my body. I’m on a single infusion medication to manage my MG, called Ultomiris, and that’s it. I always get asked, “Do you think having your thymus removed was worth it?” ABSOLUTELY. I took a risk and it has paid off. I haven’t had an MG Crisis since 2018.
I stepped back from my career as an RRT when COVID began, initially a devastating blow, but now I see it as a blessing in disguise. I always struggled physically working 12-hour shifts. The constant walking, high stress, and the mental toll of being a healthcare worker. It made me sick (literally). Losing that role was when the real rest and healing began. My training and experience as an RT allowed me to advocate for myself when I was diagnosed. That’s why my journey led me to Respiratory Therapy.
These days, I spend my time creating content about locs, running my business, sharing my experiences with chronic illness online, and attending events to educate and empower others. I’ve learned to slow down, listen to my body, rest intentionally, and plan my days in ways that support my health and well-being. MG has reshaped my views and made me more mindful. It’s taught me how to live fully on my own terms.
Well, if you’ve made it this far, THANK YOU! Thanks for taking the time to read my story. Thank you to all of the people who’ve helped me along my journey. Words can’t even begin to express how grateful I am for all of the love and support.
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