My MG Story: Part 2

It came back

Not even 2 weeks after publishing my last post on reaching remission in July of 2024, finally feeling relief from getting off oral steroids, and finding a positive outlook on life again…my Ocular Myasthenia Gravis (oMG) symptoms returned very suddenly. I had been symptom-free and in remission for about 10 months, all for this to creep back up on me again.

I went to Florida to visit my parents toward the end of July of 2024. After a long day of travel, I sat down on the couch to catch up with my mom and dad. I remember the moment when my dad looked at me and said “I don’t mean to worry you, but your eye looks droopy.” Those familiar thoughts came back. Was it droopy? Was I tired? Ehh, I’d give it a day and hopefully it will correct itself. 

Update, it did not correct itself. There I was, experiencing all those feelings all over again. The shock, the excuse-making, the swallowing of reality. 

When accepting that my disease's symptoms were back, my parents both held me and we cried together, knowing that there was a fight ahead of us.

It was a heartbreak I did not know

The first rug being pulled out from underneath me, the falling down and getting back up of MG Part 1 (diagnosis, surgery, treatment) was hard, but this...this was a new hard. I finally felt like I had my feet underneath me, and then wham!, a dodgeball right to the face. I had let my guard down, reaching what I thought was remission, and this disease returned with a vengeance. 

To add to the stress of the situation, my oMG symptoms returned with speed. For the last 2 weeks of July, I had a droopy eyelid (annoying, but not the end of the world.) Quickly, the double vision returned, even worse than the first time. It was debilitating. I could not read, drive, or work. I was wearing sunglasses indoors, half because the lights in places would bother me, half because it was embarrassing to look the way I did. At some points, I was even wearing an eye patch to help with my double vision, which was humbling (my sister said I should make it into a halloween costume this year.) I was sleeping 12 hours a day, so fatigued by my symptoms. Here we go again, I thought.

My life became a series of doctor’s appointments again, taking the bus down to Northwestern Memorial Hospital a few times a week, making small talk with the pharmacists at my local CVS (yes, it’s me again, yes picking up another script!). 

I got in to see my neuro-opthamologist. She opened the door and said “I am so sorry.” Immediately, I began crying. We were both so upset that this disease had reared its ugly head again, after so many appointments of promising results. My doctor immediately put me on steroids again to try to quickly get my symptoms under control. I dreaded the thought of what steroids did to my body the last time, but I was out of immediate options. In the meantime, she referred me to a neuromuscular specialist to explore the idea of alternative, steroid-sparing treatments.

The soonest I could get in with the neuromuscular specialist was in one month. Until then, I waited patiently for the steroids to kick in and suppress my disease. 

This was a photo of me in August of 2024, when I was undergoing fatigue-testing on my eyes while symptomatic with oMG.

An aside on my feelings

August 2024 came and went, watching beautiful Chicago summer go by, not being able to golf or participate fully in social outings…it all sucked. I had a wonderful June and part of July where I tasted remission, and felt what so many other people feel and take for granted every day, just a normal day. I was finally back to looking like myself again, finally feeling good without the steroids, finally imagining a life after this disease…all for it to come back. Now, I was living from doctor’s appointment to doctor’s appointment. My boyfriend (now fiancé) and I planned a trip to San Francisco, and had to cancel it. It was all just really upsetting and depressing.

I felt a true fighting spirit in my first go of MG, an “I can beat this and live my life still” kind of attitude. This time around, I felt so betrayed by my own body. I felt jaded and really angry, watching everyone else around me enjoy their 20s, while I am in the fight for my life. I still feel that anger (it's probably not very healthy to carry that around, but anyways). I find myself asking “Why do I deserve this?,” “Did I do this to myself somehow?” “Why does the universe want me to learn this lesson…AGAIN?” Just anger-doom-cycling through this.

Ok, now back to the story

My appointment with the neuromuscular specialist arrives. He is a well-regarded doctor at Northwestern Memorial. He explains to me my treatment options and we settle on an infusion treatment called rituximab or Rituxan. Rituxan is an intravenous infusion of a medication that depletes your B cells, and given to patients 4 times a year. The goal is to wipe out your immune system, which is causing the autoimmune disease. Essentially, Rituxan is like hitting the hard-reset button on the immune system. This would essentially get rid of whatever antibodies were attacking my immune system in the first place, while over time the B cells replenish and I generate a new and improved immune system. 

from: medpagetoday.com

It’s all kind of information-overload, but my doctor explains that the Rituxan has the most research and success behind it. It can be used as a treatment for lots of things; Non-Hodgkin’s Lymphoma, Rheumatoid arthritis, and a wide array of autoimmune conditions. Selena Gomez, who has been vocal about her Lupus diagnosis, has had Rituxan to control her symptoms (Thank you for being an autoimmune advocate, Selena!). Pursuing this treatment is all with the goal of getting me off steroids and back into remission. The only side effects were that I would be immuno-compromised, meaning I could get sick more easily.

This is the route that I decided to go down, scared, but ready. The next hurdle to jump was getting insurance to approve it…which is a whole other thing. And insurance took their sweet time, no rush or anything, just waiting on a life-changing treatment!

The beginning of Rituxan infusions 

My treatment finally got approved after 3 months of the denial/approval process, and I got a date! I was so relieved to see it on my calendar after months of waiting. I had to prepare by receiving many different vaccinations (COVID, Flu, Hep B) for things that could compromise me once I get the treatment. 

The day I had been waiting for was finally here. My first treatment (November of 2024) was a little nerve-wracking, as I did not know what to expect. My fiancé, Sean, was with me the entire day and supported me, which I am so grateful for. We arrived at Northwestern Memorial quite early and got a comfy chair near a window in the infusion center. A nurse set up my IV and then administered a steroid, benadryl, and tylenol to me, which took about an hour. The steroid drip makes your mouth taste like metal weirdly, so I enjoyed about 5 blue raspberry Jolly Ranchers while sitting there. Once that was in my system, they began the Rituxan drip, which took about another 4 hours. It was much more relaxed than I anticipated. Sean brought some lunch, I listened to some podcasts, called friends. It was really just killing time.

This was my POV from my very first infusion of Rituxan.

Luckily, the entire process was pretty painless, and once the drip stopped, I could go home! Once I was home, I slept for a few hours, groggy from the drugs.1 infusion down, 1 to go. Rituxan has to be administered in 2 infusion sessions, 2 weeks apart, with most patients repeating this process every 6 months or so.

from: rituxan.com

After the first session, you can sometimes feel run down, tired, achey…which I did a bit. I laid low, as to not get sick before my next treatment. This time crossed into Thanksgiving, and I chose to stay home to avoid getting sick, but it was hard to spend the holiday alone (also Thanksgiving is my favorite, so that was quite sad.)

2 weeks passed, and round 2 came and went. It was even easier than the first session! More sitting in the big comfy chair, chatting with the infusion center nurses and slipping into the sweet sweet benadryl nap.

Today

I have just completed my second round of Rituxan (as of May 2025). I am still immuno-compromised and have had a few infections since November, but all things considered, I am still doing well. I have tapered off the steroids (again, hallelujah!), and stayed symptom free since October of 2024. I am hopeful it will stay that way. 

In March of this year, I got engaged to the guy who has stood by my side through all of this, and we are currently planning an MG-friendly wedding (crossing my fingers that I will be healthy enough for the big day!).

My life is different now. On good days, I say “modified,” and on days I am feeling negative it's “never the same.” The reality of an autoimmune disease is that it never is "done," you’re never going to "beat it" as I previously, incorrectly thought.

This is the new norm. The goal of treatment now is to “quiet” my disease. It’s still there, it’s just quiet. While the majority of my MG symptoms are at bay, I still have to sleep during the day to reset my eyes, but once I do, I feel great. Throughout the day, I feel some eye-soreness, so I always keep my MG medication, Mestinon, and eye drops on me. Strenuous exercise is a no-go anymore, but that is ok. Travel is tricky, there is no more jam-packing everything you possibly can into a vacation. Life is now Life 2.0 (adjusted for MG).

These are my Mestinon pills, I take 1 every 4 hours for eye fatigue and soreness (if anyone knows of an extended release version hmu!!). They are in every purse, pocket, and corner of my house.

Emotionally, I feel as if I am still trying to piece together what the hell happened in 2023 with my initial diagnosis and all that happened between then and now. My interactions with those who are not in my closest circle have been challenging, as I struggle to relate to those around me. I mean, who else in their 20s is dealing with disease diagnosis/surgery/infusions (I sometimes refer to them as my old lady problems.)

I also think to myself, who wants to hear about my depressing health story? I feel as though, no one truly understands what I am going through, or how my life has unravelled so fantastically. 

I am still me, but man has this changed me.

Awareness and Understanding 

from: myastheniagravisnews.com

My intention with writing and posting my blog now is to tell my story during Myasthenia Gravis Awareness month. Every June is a chance to bring awareness to this rare disease (100-350 cases per 1 million people). By sharing my story, my hope is to bring both awareness and understanding to those around me.

Here are a few tid-bits outside of the story-telling side of things that I think are important to share:

• Firstly, I am immuno-compromised. I am weirdly lucky that my MG happened after COVID, as I think more people understand what that means now. I wear masks in public, on planes, in the grocery store. Obviously, everyone can make their own choices when it comes to their health, but please, think of us immuno-compromised folks if you’re sick but still want to go out in public, or have COVID but still want to go out to dinner. It’s a hard world out there, and the risks immuno-compromised people take are calculated.

  
  

• Secondly, I will try to not make this political, but the current administration is actively dismantling research related to Myasthenia Gravis. This is a rare disease, patient lives and futures depend on research. My life and my treatment options depend on research. My own doctors are stuck as their grants are being canceled, life-changing studies just paused indefinitely. While I don’t expect to change health policies or really anyone’s mind, I do wish people consider the impact of this administration outside of the core issues on the news. It’s a scary time for medicine. 

  
  

• Lastly, I am lucky to have the support of those close to me. My family, my fiancé Sean, his family, friends, they have all supported me and lifted me up on the days I needed a boost. My doctors have also been so fantastic, giving me hope with treatment options and helping me every step of the way. As shitty as this has all been, it’s made me realize that I have been blessed with some caring people in my life. If you have checked in with me and simply asked, "how are you feeling?," know it meant more than you ever realized <3

For more information about myasthenia gravis, and ways to support MG research, please visit the below links.

https://myasthenia.org/

https://myasthenia.givevirtuous.org/donate/donation-form

https://myastheniagravisnews.com/

Thank you so much for reading!