My MG Story

The past year and a half of my life has truly been the darkest and toughest, but my experience of suddenly being diagnosed with a rare, life-long, auto-immune disease at 26 years old has put much into perspective for me. 

To date, I’ve kept the entirety of my story private, hoping that one day, I'd be able to eloquently share my experiences and emotions of the past year in a blog post. This post has been a working draft for the past 8 months of my recovery process - I would write and become so overwhelmed with emotion that I had to stop. I now understand that I had to heal emotionally & physically before writing my story out and gain the confidence to share it. I am thankful that day ultimately came, and the cloud shrouding my thoughts has largely dissapated.

While my path to recovery has been an uncertain one, I think sharing my story publicly is one of the many pieces of my healing process and a step in the direction of my new normal. I share this story NOT to seek sympathy, but rather to bring light to a rare disease and to be a voice of hope for other MG patients looking for answers or help.

The day my life changed forever

I had never had a true “world turned upside down” moment until April of 2023. 

No one, nothing, can prepare you for that moment, that feeling of sitting in the doctor’s office, hearing the news you feared. The sinking pit in your stomach, knowing your whole life is about to change.

It all began in March of 2023. I attended my friend’s birthday party, powering through a headache I had earlier in the afternoon (I had been having a lot of headaches lately). 

Afterwards, I came home to take my makeup off, and noticed my left eyelid looked droopy. Thinking I had a long day, I shrugged it off and went to bed. I woke up the next day and my eyelid was still droopy. My anxiety kicked in, I spent the whole day waffling back and forth as to whether or not to go to the ER. Maybe I have a stye? Maybe I’m just tired? By the end of the evening, due to the pleading of my parents, I ended up checking myself into the ER where they ruled out a stroke, Bell’s Palsy, and a bunch of other scary things. The doctor gave me a tentative diagnosis of a “Cluster Headache,” a condition where your headache is so bad it can cause your eye to droop. Before I left, the doctor mentioned in passing “You know, this could be this really rare disease, it’s called Myasthenia Gravis. It really only affects men in their 60s and 70s. You are so young and mostly healthy so it’s highly unlikely that is the case.” 

Whew! Dodged a bullet there, I thought. The doctor said the ptosis (medical term for eye drooping) should go away within a day or two, which gave me some comfort. 

Well, a day goes by, then two, then a whole week, and my eye still looked droopy by the end of the day. I was concerned that my symptoms were not going away like the ER doctor said they should. 

The anxiety of looking in the mirror and constantly seeing my eye droop caused me to scramble to get a doctor’s appointment. This photo was taken about a month after my symptoms started.

My Left eye would fatigue throughout the day, to the point of my eye only opening this much by the afternoon. By my first message to my PCP, she sounded the alarm bells and so began the crazy process of getting a diagnosis.

The next 6 weeks of my life, I felt like I spent more time at Northwestern Memorial Hospital than at my home. I saw endless doctors, had multiple CT scans & MRIs, as well as countless labs done, all as my symptoms worsened in rapid progression. My right eyelid began to droop too, the fatigue in my eyes was so severe that I couldn’t keep my eyes open when doing something as simple as watching TV. 

Then came the blurry vision and double vision. This was the most frightening, as my day to day tasks became impossible. I couldn’t cut vegetables without seeing two of them. I was in the airport and couldn’t read an important sign. Certainly, I couldn’t drive a car now. The vision changes were so disorienting and terrifying. 

These were some examples of what I was seeing everyday with blurry and double vision.

Double Vision

From allaboutvision.com

Blurry Vision

From assileye.com

I even saw an optometrist to maybe rule out an eye infection. She looked at my eyes and said they looked normal and healthy. The weird thing was, she mentioned her 78-year-old mom had something called Myasthenia Gravis, and I should be checked for that. Man where did I hear those words before? Oh the ER doctor! But he said it was super rare and is really only seen in older people so I’m good right? 

I immediately turn to Google, as one does, and see this “Myasthenia Gravis” is a rare (14 in every 100,000 people), life-long auto-immune disease, causing weakness in voluntary muscles. Symptoms usually start with muscle weakness in your eyes, causing eyelid droopiness and blurry/double vision. Then, symptoms can appear throughout the rest of your body, making things like talking, chewing, swallowing, and even breathing much more difficult. The cause is believed to be antibodies produced by your thymus gland (little gland that sits in front of your heart) that prevent the way your nerves connect to your muscles. 

From: myastheniagravisnews.com

Reading through anxious breaths, I think to myself, could this be it? Is this what I have? I don’t want this. I am looking for answers but I sure as hell do not want this to be it.

The lab workup to diagnose a disease like this is a process. Firstly, you need a specialist to order the labs for you, and specialists book out faaaaaaar in advance. I asked for a referral in March to see a specialist, which they gave me their first available appointment…in June. As my symptoms worsened, I called incessantly, begging for any earlier appointment, pleading that someone would take me seriously to get some answers. I finally got an appointment for the end of April with a neuro-opthamologist. 

I walked into her office, and after a series of eye exercises fatiguing my droopy, blurry eyes, she officially diagnosed me with Ocular Myasthenia Gravis (oMG). 

I can’t breathe. I’m trying to listen to her, but my eyes widen, a lump forms in my throat. How the hell is this happening right now? 

That was the moment my life changed forever.

My neuro-opthamologist said she was 99% certain by the behavior of my eyes within the first 10 minutes of being in her office that it was oMG. Those headaches I had been having… it was because my vision was changing. Of course, lab tests for the presence of antibodies would confirm this diagnosis. However, my doctor explained to me that half of patients with oMG actually test negative for all antibodies, yet still have the disease (this is known as being sero-negative). She explained to me calmly that this is treatable and she’d start me on an MG medication and an oral steroid right away. She reassured me we were on the right treatment path and she would see me in 6 weeks. 

I sobbed on the bus ride home. The Google images of MG patients flashed before my eyes, patients with paralyzed smiles, patients in wheelchairs. It was devastating. And it truly came out of absolutely nowhere, like a freight train of symptoms.  

Accepting this diagnosis was so challenging at first. My world was turned upside down in a matter of 6 weeks. I felt like my brain was still trying to play catch up. My heart was broken. My future felt uncertain. My whole life felt out of control. 

The interesting asterisk with Myasthenia Gravis is that there are 2 types: gMG- Generalized Myasthenia Gravis (symptoms throughout your whole body) and oMG- Ocular Myasthenia Gravis (symptoms just in your eyes). Ocular Myasthenia Gravis (the kind I was diagnosed with) can turn into gMG over time, where it begins to affect the rest of the muscles in your body. Time is the only indicator of whether or not this will occur, some studies say within 1-3 years of the onset of symptoms, the disease will generalize or not. Statistically, half of oMG patients go on to generalize.

Weirdly, learning this made me feel as if I was on a ticking countdown clock. The question of whether or not this would get rapidly worse in the next year loomed, and to be honest, still looms today. Will I be much better in 6 months? Will my life look completely different? Will I be able to do the same things I do today? 

6 weeks of the MG drug (Mestinon) and corticosteroids and I am back in my doctor’s office. She explained to me that from my lab results, I am actually one of the “sero-negative” patients, meaning the disease presents symptoms of oMG without the presence of the common antibody causing them. The antibodies that cause my symptoms are thought to be produced by that little gland that sits on your heart, the thymus gland.

She was glad to see my symptoms began to improve with the treatment plan and wanted to up my meds to continue the positive movement. However, within the last 10 minutes of the appointment, she dropped a bomb on me; she was recommending me for surgery. 

SURGERY? I had droopy eyelids a month ago and now I am recommended for surgery?

Yep, surgery. A thymectomy to be exact - the removal of your thymus gland. This is a modern way of treating MG, as thymectomies were only previously performed on people with thymomas (tumors on the thymus gland). By removing the likely source of the antibodies, it is thought that you can improve the course of the disease. According to the Cleveland Clinic, 70% of patients have complete remission or significant reduction in medication needs within a year of the procedure. 

From: my.clevelandclinic.org

For me, this was baffling news. The word surgery is very scary. No one likes to be cut open, but the prospect of remission gave me hope for the first time in a long time. 

I had so many questions. My surgery consultation day arrived and I learned the procedure would be performed robotically (ever see the youtube video of the robot dissecting a grape? Yea that robot!). They would make 4 small incisions in my chest, and piece by piece, remove the thymus gland. Recovery would take about 2-3 weeks. I was given a date, which happened to be 4 months exactly from the day of my first symptoms. I cannot believe/comprehend/understand how my life has changed so dramatically in 4 months. 

Before I left, my surgeon approached me with a question, would I donate my thymus organ to his NIH study? I picked up the pen and signed immediately. The prospect of supporting the research/treatment/prevention of this disease and potentially lending a hand to the next scared girl in my position made me feel so honored to help. 

Surgery day came and I had my Mom and my boyfriend by my side to guide me through it. 

I was in and out the same day, no complications. However, it was a major surgery, in which they deflated my lung so I slowly had to build back my lung capacity over the next few months. Thankfully, I was not in a severe amount of pain and with the support of my people, I slowly turned the corner. 

Weirdly, surgery was the easy part.

One of the hardest parts of this entire journey of oMG has been the waiting. I am waiting to see if this disease will gut-punch me again and spread to the rest of my muscles. Again, only time will tell.

Another grueling part has been my body’s reaction to the steroids I’ve been prescribed. Steroids are a double-edged sword; they saved my life but caused so many side effects, negatively affecting my mental health. Everything about my body changed almost instantaneously. Steroids cause water retention in the body, and suddenly weight, which was never a problem for me, was something I thought about constantly. Every side effect listed for oral steroids is one I have experienced.

On top of that, I have 4 distinct scars which remind me everyday what hell I have been through.

I told my Dad once that throughout the day, I feel like maybe it’s not real and maybe it was all a dream. Then, I put my scar cream on my scars every night and am reminded that it was indeed very real. My body is a battlefield, fighting this war of disease. I keep having to remind myself that the way I look in the mirror is one minor setback & is a part of the plan to get me healthy again (admittedly, some days I cycle through feeling down and reminding myself of that many times).

My new normal

Over the past 7 months, I have slowly tapered off oral steroids and can officially say as of Memorial Day 2024, I am finally off of them! I lost the water weight I was carrying which boosted my confidence. The very best part is that my disease is now in remission, which typing that out I am afraid of jinxing myself. This means the life-threatening symptoms are gone, but I still experience some symptoms like eye fatigue/headaches. I still take a pill 3 times a day (Mestinon - Pyridostigmine) which helps maintain muscle strength in my eyes. I take a nap everyday to rest my eyes and have to work in dark conditions, as sunlight fatigues my eyes now. I am still on watch for the next few years to see if my symptoms progress, but I share with my loved ones that as each day passes, I feel more and more like myself.

What I have learned

This experience has completely changed my outlook on life. I have been chronicalling the things that have been rolling around in my brain for awhile, and want to share them below. Here are my biggest takeaways from a life-altering event like this:

• Your health is a gift and DO NOT take it for granted. I would give anything to wake up and not take my pills out of my extra large pill organizer (I got a fun color to make it less sad lol). 

• I am lucky to have been diagnosed early and treated immediately with the latest and greatest treatments. Some patients’ wait for years to receive a proper diagnosis, as this is a very challenging disease to diagnose. Luckily, I happen to live a mile away from Northwestern Memorial, which is ranked #10 in neurology in the US. I can’t thank my medical team at Northwestern enough, they saved me. I even said that to my surgeon at my 6 month check up and started to cry (embarrassing!!). My neuro-opthamologist has shown me so much care and understanding, she is simply the best. 

• I see strangers with more compassion than before. Knowing my disease is mostly invisible, I walk around others and they don’t have a clue what I am going through, and vice versa. Everyone has something. Big or small, it matters. Your kindness to a stranger can uplift someone in a dark space. The days that people showed kindness to me as I left Northwestern with a hard piece of news, those moments made me realize the positive effect I can have on strangers who are also going through their own thing.

• Without the support of my family/my boyfriend, I 100% would not be here today. I tell them I am thankful for them all the time, but I don’t think they understand how they have saved me, emotionally. Diagnosis and treatment of a disease can take you to some dark places, their unending support has been the life raft I’ve needed in this time.

• That being said, I’ve also learned how resilient I am internally. I think once I could grasp what was happening to me, I felt this unexplainable internal drive to fight. Now don’t get me wrong, there are days where I feel like giving up & throwing in the towel on this whole thing. But more often than not, I am deeply determined to get better.

• Finally, life is precious and can change at any moment. Any freakin moment. You don’t grasp that until you have that moment. 

If you feel compelled to learn more about Myasthenia Gravis, please visit https://myasthenia.org/. 

Thank you for reading!