My MG Progression

My myasthenia gravis (MG) symptoms first began in 2013. I should say "symptom" because it was only vision issues. I never had a droopy eyelid, and I couldn’t really explain the vision as double at the time. For me, it was more difficult to focus, and it felt like my eyes had a mind of their own.

Since I was pregnant at the time, the only medical professional I saw was my OBGYN. He attributed the vision issues to hormones during pregnancy and since I trusted him, I didn’t dig any further. Instead, I lived with the symptom telling myself it would go away soon.

My vision issues continued

Well, that symptom lasted the majority of my pregnancy. Like clockwork, it would get worse every day around 2 PM. At first, I attributed that to potential high or low blood sugar levels. I decided to pay more attention to my diet and the timing of when the vision issues started and what I ate, or didn’t, around the time my vision would get worse.

Unfortunately, after documenting everything for several weeks and tweaking things, I came to the conclusion that nothing helped. A Glucose test for pregnancy would also show that I was within the normal range, so I continued on, suffering in silence.

Noticing leg weakness

Once I delivered my baby, about 5 months after the vision issues started, I noticed substantial leg weakness. I would have to lift my legs one at a time into the car or to put on shoes and cross my legs. I did it almost without thinking until about 2-3 months postpartum. I realized then that it might not be the C-section causing this type of weakness.

Since the vision issues were still present as well, I decided to follow up with my doctor. During my next appointment, I was told that the vision issues were still present because I was nursing and that my leg weakness could more than likely be attributed to a muscle hernia I developed from delivery. It all seemed to make sense to me so again, I went home and told myself to deal.

I tried all sorts of core exercises to improve my strength hoping that it would help my leg weakness, yet I only found that working out made it worse. This continued, with my vision issues and leg weakness, for almost a year and a half. When I was done breastfeeding, at 12 months postpartum, my vision didn’t improve and my leg weakness persisted, however.

My diagnosis didn't make sense

After another appointment with my OBGYN, whom this time didn’t have answers, I decided to see my primary doctor. She supported what my gynecologist had said that it had to be related to pregnancy and the hormones but would send me to an ophthalmologist just to be sure. He dilated my pupils and checked my optic nerve. He did an eye exam and concluded that I was having painless ocular migraines, every day for a year and a half.

I left discouraged and frustrated because his diagnosis did not make any sense. I’d never heard of anyone having migraines every single day, at the same time, for so many months. I was defeated.

Swallowing problems began

It had now been almost 2 years from the onset of my vision issues and no relief or end in sight. That’s when the swallowing issues began. It started after a dinner of carne asada. I couldn’t chew anymore. My mouth went numb and paralyzed to where I couldn’t form a smile or give my children a kiss. I was convinced I had a stroke but was so afraid to be the squeaky wheel who got dismissed and sent home by their doctor again, that this time I didn’t make an appointment or tell anyone.

The swallowing issues progressed where at times I would choke leaving me terrified. During nights out with friends, they would comment that I lost my smile and after looking at pictures, I could see why. Around the same time, my arms became so weak that I couldn’t put my hair in a ponytail or even hold a coffee mug.

Finally seeing a neurologist

I couldn’t breathe but I hadn’t considered that abnormal since I suffered from anxiety, and I was definitely more anxious than ever. Last but least, the leg weakness became so bad that my legs would give out attempting to carry my son upstairs. I knew it was time to see a doctor again but this time, I researched and knew it had to be a neurologist.

Thankfully, he was the first and last neurologist I had to see for a diagnosis. I guess by then it was fairly obvious what we were dealing with but blood tests would only confirm.

Although I try not to play the what-if game, I do wonder often if my MG would have ever progressed from ocular to generalized had I received a diagnosis sooner. That’s not the way my story played out though and at least I can say I’ve learned more than I ever would have about my health given this experience.