A pencil drawing of a woman where half of her face and eye are blurring and fading away.

The Order My MG Symptoms First Appeared

For many individuals with myasthenia gravis (MG), their symptoms appear slowly over years before they finally get answers to their suspicions or start to realize there may be a condition causing their symptoms.1

Symptoms after starting a cautionary drug

For others, their symptoms may come on quickly. My MG symptoms started rapidly after starting a cautionary drug for MG, hydroxychloroquine (Plaquenil®), used to treat what doctor's believed to be Lupus. It ended up being deemed a misdiagnosis.2

Changes in my facial expressions

Right after starting the hydroxychloroquine, I often thought I looked like my grandma when I glanced in a mirror. I never felt I resembled her before. I wasn't sure exactly what it was at first, but as the month progressed, I realized the slight difference in my expression was what made me look like her. I noticed my smile and cheeks were not moving like they usually did when I spoke and smiled.

Double vision

The problems with my vision also started soon after the hydroxychloroquine, which was noticeable when driving. It was just a few months into the COVID pandemic at the time so I was not driving much. But each time I did, my eyesight was slightly worse.

Cars and my surroundings were blurry, and within a month I saw double, even triple, of everything. I was alternating between closing 1 eye to try and help. But after a month, I had to call driving quits and knew I needed to follow up with a doctor. I had no clue what was going on or why this was happening.

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Crisis time

The following symptoms came on fast, in a matter of hours, defining what I soon learned was an MG crisis. And they happened only a day after deciding I could not drive anymore.

Trouble speaking

I was out to lunch with a friend when I started eating a salad. After only a few bites, my words began to slur during a conversation. I was having trouble pronouncing anything or getting my mouth and tongue to work to get words to come out.

Drooping of one eyelid

Within minutes of my speech slurring, 1 of my eyes started to droop. My friend and I both assumed the combination of having trouble speaking and the drooping of my eye to be an allergic reaction, so we decided it was best that I go to the emergency room.

Once at the Hospital

I was at the hospital for a day. It started with a long night of being checked in, vitals, IV, and then rounds of tests, with a stroke being of most significant concern to the staff. While there, more symptoms started to appear.

Muscle weakness

At some point during my stay at the hospital, the weakness in my arms, hands, and legs started. I struggled to hold my phone, write, walk, or stand.

After getting a diagnosis

After a day at the hospital, tons of tests, and lots of students coming and looking at my eyes twitch, a doctor gave me a proposed diagnosis of myasthenia gravis. They were confident with this diagnosis based on me being a female in my twenties and the combination of symptoms. They did not do any testing specifically for MG at the hospital and sent me on my way.

Weakness of my mouth muscles

After I left the hospital and during the following weeks, I continued having more trouble chewing and swallowing. Using a cup was problematic, but sucking through a straw was impossible. My jaw muscles ached, and I had difficulty chewing while eating. I constantly felt like I was choking and ate with a trash can next to me so I could just let food fall out if I started struggling or panicking.

Smokers may relate, but I only wanted to smoke and relax after I left the hospital, and I felt defeated when I went to try and smoke, and my mouth was not cooperating at all.

Heavy head and neck pain

The other prominent symptoms that started after my diagnosis were my head dropping forward and neck strain and pain. My head feels heavy and drops forward often, which is more prominent as I do physical activity and the day progresses.

I focus on the blessings throughout my diagnosis

The MG diagnosis journey is unique for all of us with it, but it almost always difficult. However, many blessings transpired during my diagnosis that I focus on rather than the negative.

I never have had breathing issues and was thankfully diagnosed within 24 hours. I am forever grateful for that knowledgeable doctor at that small-town hospital who illustrated how impactful MG awareness and proper quality healthcare is for those trying to get answers.

My lupus doctor (which we learned was a misdiagnosis) was unable to treat my MG, but they referred me to a colleague who was able to get me started with Mestinon within days of my diagnosis. This was huge because I struggled to obtain an appointment with an MG specialist sooner than 2 months out, a dilemma many of us unfortunately experience.

Thanks to my mom helping out due to my inability to speak, calling for days straight attempting to get me a sooner appointment, and emphasizing my critical conditions to those she spoke with, I was able to secure an appointment with an MG specialist within a month after my diagnosis and was soon started on treatment.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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