I don’t really remember when the symptoms really started.
I mean, I experience eye-twitching every now and then. But this twitching sometimes went into full-on contracting (the best word I can think of to describe the sensation). Not just the eyelids this time, but the area around my eye.
I would also get double vision especially after staring at something for a while. I just assumed it was because I needed new glasses.
One day, I noticed my left eyelid was drooping — it looked as if it wasn’t fully opening anymore.
Here’s what my eyes look like on a bad day. The left eyelid (this is a mirror image) is drooping at almost the halfway point.
I went to my opthalmologist.
He did a series of tests on me, on my eyes. His concern was obvious on his face, but just kept quiet.
“I’m just trying to rule out a disorder.”
“Can I know which disorder you’re trying to rule out?”
“Ocular Myasthenia Gravis.”
He referred me to a neuro-opthalmologist for further testing.
The neuro-opthalmologist confirmed the diagnosis after doing a 5-minute ice pack test on my drooping eye.
I got officially diagnosed with Ocular Myasthenia Gravis on August 15, 2018.
Myasthenia Gravis is an autoimmune disease.
Autoimmune means my own immune system is attacking my body’s own tissues.
In my case, the attack interrupts the connection between nerve and muscle the neuromuscular junction.
Autoimmune also means the cause is still unclear, and there is still no cure.
Myasthenia Gravis is not hereditary, it is also not contagious.
If left undiagnosed and untreated, it could lead to a Myasthenic Crisis — which can be fatal.
Mysthenia Gravis is also called the Snowflake Disease because it’s very rare for 2 patients to have the EXACT same set of symptoms, and may have different timelines.
This means that some MG patients start experiencing symptoms in their eyes (like I did), while others may not have ocular symptoms at all.
My neuro-optha sent me for a single-fiber EMG.
It’s a test to see if there is a neuromuscular transmission defect — which is basically what Myasthenia Gravis is.
It also involves inserting a needle electrode into the muscle. I didn’t feel any pain, which the technician attributes to a high pain threshold.
My single-fiber EMG results confirm the diagnosis of Myasthenia Gravis.
By the time I got the results, I’d already started to feel symptoms in other parts of my body.
I easily get winded, I feel so tired at the end of the day, and my legs and arms feel like I’ve burned them at the gym (when I’ve only walked a few meters at the mall).
I was finally prescribed with Mestinon for the MG, and Keltican for the numbness and tingling in my right arm and leg.
My neurologist also had me scheduled for a chest CT scan, to check for a thymoma - a usually benign tumor of the thymus gland.
What was supposed to be a normal medical procedure didn’t end up well.
After my CT scan, my husband and I had lunch at a nearby mall. I couldn’t eat much, I felt nauseous and queasy.
By the time we’d gotten home, I was so nauseous I threw up most of my lunch.
I decided to lay down for a while. I remember coming in and out of sleep, worried I might skip a dose of Mestinon and further eff up my symptoms.
After a couple of hours, I barely made it to the bathroom and threw up again. This time, it left my whole body shaky and in cold sweats. I could barely breathe, and I talked in short phrases.
Because I remembered what my neuro-optha told me (once I run out of breath, immediately go to the ER), I asked my husband to take me to the ER.
I ended up staying there for 4 days. It turns out, the MG has generalized to the rest of my body, including my respiratory muscles.
If I didn’t go to the ER at that time, I would probably have progressed into a full myasthenic crisis.
My diagnosis upon discharge was “exacerbation of MG due to asymptomatic urinary infection”. I had a UTI but didn’t have the usual symptoms. Remember, even the smallest infection could set off a flare.
I regularly saw my neuro after that, and my Mestinon dosage was increased because of what happened.
My CT scan also showed that I didn’t have a thymoma, but my neuro referred me to a thoracic surgeon so I can see if I’m a viable candidate for a thymectomy.
(I will write about my thymectomy experience in another post.)
Your experience mirrors mine. I was diagnosed around the same time. Mine started the same way. I kept putting off going tho have my eyes checked because we couldn’t afford new glasses. Mine were cracked so I assumed the double vision was from that. Mine generalized before my diagnoses. Praying for your journey.
Same here! I think I’ve had double vision long before we thought of getting myself checked. And yes, I blamed my glasses too because I thought I just needed new ones.
Praying for you, too! Thanks for dropping by here x