My Diagnosis with Myasthenia Gravis During Pregnancy
Getting a diagnosis
In February of 2019, I joyfully found out I was pregnant. My husband and I were still celebrating over the news when my symptoms started getting worse. I quickly went to the internet and found myasthenia gravis.
My heart dropped as I was reading it. I fit the bill with diplopia and ptosis. I was 27 at the time, which matched the usual patient profile of women between 20-40 years of age.
After a visit to the optometrist, I was recommended to see an ophthalmologist, who recommended me to see a neurologist.
From then, I had a few blood tests done and was confirmed to have a rare form of myasthenia gravis with anti-MuSK antibodies. It took about one month from my first appointment to the diagnosis. I am grateful that my diagnosis journey was a lot shorter than most with this disease.
Soon after I quit my job and was met with a whirlwind of emotions, doctor appointments, and hospital visits. Due to my diagnosis, I was transferred from the regular OBYGN office to the perinatology clinic which deals with high-risk pregnancies.
I was in and out of the hospital with my neurologist and perinatologist, trying to find the balance between helping my symptoms and protecting my baby.
By June of 2019, my symptoms had progressed from just diplopia and ptosis to weakness throughout my body. I had trouble swallowing and everything that was once effortless became increasingly difficult.
My arms would shake when doing my usual makeup routine. I was too weak to change my toddler's diaper. Just getting a shirt over my head felt impossible.
Worried about a crisis
Every night I worried I would have a myasthenic crisis. My breathing was so heavy I would sometimes wake up gasping for air. We decided to make a doctor's appointment and they referred us to the ICU.
They admitted me for acute respiratory failure and proceeded to figure out the best way to treat my failing body while protecting my baby. After back and forth between the ICU doctors, neurologists, and perinatologists, we landed on prednisone and plasmapheresis (PLEX).
It takes a village
PLEX worked wonders and by July 4th the doctors sent me home. I had never been happier to take a much-needed shower, change into comfy pajamas, and lay on my freshly made bed.
The following months were spent trying to keep me and my baby healthy through whatever means possible. I was on prednisone and pursuing holistic treatments. Acupuncture ended up being very effective for me and kept me relatively stable up until my delivery.
I got as much help as I could, hiring a postpartum nanny and asking family and friends to babysit. It really takes a village. Without my community bringing us food, offering to take my older child out, and providing for my needs, we would not have been able to recover.
There is hope
Though I am still relatively new to this diagnosis, it has taught me many life lessons. Now that I am in medical remission, I live each day with gratitude.
I am learning to manage my flares through pursuing holistic health, physically, emotionally, and spiritually. There is still so much ahead of me. I now have even more reason to live it out with purpose and passion.
Have you found it difficult to discuss your diagnosis or symptoms with loved ones?