Meet Amanda, a determined individual with myasthenia gravis, who embarked on an extraordinary journey to train for our Triple Crown Showdown 5K. Despite periods of remission and relapse, she navigated complex treatments and found strength in her support system of family, friends, and medical professionals. Amanda's story is one of perseverance and hope, culminating in her inspiring decision to train for our 5K, symbolizing her victory over the obstacles posed by her MG. In this Friday feature, we delve into Amanda's remarkable journey, the challenges she overcame, and her unwavering commitment to not only conquer her own battles but also to advocate and inspire others within the Myasthenia Gravis community.
Can you share your initial experience of being diagnosed with Myasthenia Gravis in 2013?
My symptoms actually started in 2011. Over the course of the summer that year, I recall my days at work getting harder and harder because my eyes couldn't seem to focus sometimes, and I found myself napping a lot to try and alleviate the fatigue. I remember complaining one night at work in October that "something is going on with my eyes", and on my way home that night while driving, one car split into two! I thought I might be having a stroke, so my mom took me to the ER where they diagnosed it as "sinusitis", despite having no symptoms of it. They didn't have a clue. I had begun to see a neurologist who was not very kind or compassionate with me, however I ended up losing my job and my insurance due to lack of attendance as a result of the symptoms. For over a year my symptoms gradually got worse - I went from having bouts of double vision to facial weakness, to general fatigue and ended up googling my symptoms (which always makes the doctors laugh) and diagnosed myself. From there, it was finding a neurologist to believe me which was a lot harder than I expected.
What was it like being diagnosed via a single fiber EMG after blood tests came back negative?
Validating. When the blood tests came back negative, I was so confused and hurt because by this point, even the doctors were pretty convinced that MG was the proper diagnosis. The single fiber EMG itself wasn't anything scary - it's just an acupuncture size needle that you can't really feel. I was giggling through some of it, actually, because of the way it would make me involuntarily twitch. The very kind doctor who did the procedure kept saying "you poor girl" and "I'm so sorry" because - according to him - I was the worst case he'd seen in 10 years. He ended up asking if he could bring in some visiting interns that day because it was so rare to see it as advanced as it was, and I agreed. I thought it would help these young doctors recognize the disease and prevent another person from suffering the way I had through the doubts and gaslighting of others - medical professionals included. The number of times I had heard "maybe it's psychological" was so infuriating, so to finally have that diagnosis was like "see I'm NOT crazy!"
How did you manage your symptoms during the seven years of remission after your initial treatment with prednisone?
To this day my current neurologist and the surgeon who did my thymectomy say they have no explanation for my case... because in those 7 years of remission I was on no medication at all! I didn't take anything. In late 2021, My neurologist decided to do a blood test so he could update his records and that's when I discovered that I was not, in fact, seronegative, but AcHR positive. It was so strange to go from negative on the blood tests, but also validating again. Our best guess is that the initial blood tests in 2013 were inaccurate with a false negative, but it still doesn't explain the uniqueness of my case.
When your symptoms returned in 2020, how did you feel about undergoing various therapies, and what were the challenges you faced with each?
When the symptoms came back it was heartbreaking and exhausting. I just wanted something to work so I could get back to my life. Most of the challenges came with the medication either not being strong enough or the side effects being so severe that I couldn't continue the therapy. Cellcept in particular broke my heart because the medication worked wonders for my symptoms, but the side effects were so awful I couldn't stay on it. After I failed Cellcept (and had previously failed Imuran for similar reasons), we started on IVIG. Initially IVIG worked wonders. I'll never forget that first week after the initial dose of IVIG because I had so much energy again! I even went on a 5-mile hike with my dogs. I'll also never forget the feeling of it wearing off. It was like a light switch just got turned off and the brain fog and fatigue just popped right back into my body. I never had such an extreme reaction to IVIG after that first dose. It was just enough to keep me stable, but still symptomatic and I had lost a lot of weight because I just didn't have the energy to eat and couldn't swallow food.
Can you describe the events leading up to your hospitalization in April 2023 and your experience during those five days?
Depression. On the IVIG I just couldn't continue living like I was, so I spoke with my amazing neurologist Dr. Clark about other potential therapies. Vyvgart had just been approved, so we went through pre-auth to get me started on it. Again, huge success in March. I felt like myself once more, but it didn't last. March 3, 2023, I was at a concert, and by April 3, I was hardly able to move around on my own... and insurance dragged their feet with the pre auth to get me another dose of Vyvgart. By the time I got the pre auth, I had to wait an additional week for an infusion, and it was too little, too late. I couldn't hardly speak for two days, couldn't swallow, and by the morning of mid-April, I noticed I was having a lot of trouble breathing, especially while standing. Dr. Clark had taught me to check for breathing by taking in as big a breath as I could, and while exhaling count to 40 - not slowly - but if you can't make it to 40 you should probably go to the ER. I couldn't even make it to 30. My mother-in-law became my voice that day and without her there during intake, I don't know what I would have done. It was scary. During the hospital stay, it was lonely and depressing. I am lucky to have a good support group and my husband stayed with me until late into the evening until I forced him to go home. Lots of visitors and support, but I was still so very depressed and so very done with the disease. It's important to note that one of my nurses administering a dose of IVIG didn't want to use the pump because, in her words, it was finicky. You NEED to use a pump with IVIG or you risk stroke. So many people - including myself - didn't know this fact. It's so vital to know so that you can advocate for yourself... because you absolutely need to advocate for yourself when you have MG.
How did you and your neurologist decide that it was time to try a thymectomy, and what were your thoughts going into the surgery?
Because of the severe depression taking hold of my life, I decided since I was AcHR positive and still young enough that I wanted to try the thymectomy. So, when Dr. Clark came to visit me in the hospital, I told him that I couldn't continue living the way I was, and I wanted to try and fight it by any means necessary. He was in agreement, and he put me into contact with KU. By June, I was in the stages of preparing for the thymectomy. I immediately noticed an improvement in my symptoms. I recall going into surgery with double vision, despite just having finished a round of Vyvgart, and waking up from surgery with regular vision. Recovery itself was not terrible at all, since my surgery was all done robotically. If you are brave enough to google images for a robotic thymectomy search, you'll see something that makes you look like a transformer. I have three small scars on the left side of my body and the hardest day was the day coming home from the hospital. I was bruised and tired from what is technically trauma to the body. As hard as it is, however, it's vital to start moving after surgery as much as possible. The surgeon told me I needed to walk at least 30 minutes uninterrupted a day, and so that's what I did. The first few days were the hardest and I was not walking fast at all, but I did it on a treadmill. Even if I had to crawl, I was moving, and that was all that mattered to me.
What inspired you to train for a 5K, and how did you begin your training regimen?
My siblings are both runners, with my older brother being a crazy but inspiring person who ran his first Ultra Marathon at the age of 46. I always had a dream of running a 5K with them, and when I realized that my symptoms were continuously improving, I thought I'd put myself to the test. As I started to run, I noticed that I wasn't getting weaker, but I was getting stronger. Running is kind of funny, you might hate it while you're doing it, but after you're done you find yourself saying "I can't wait to do that again!" I always like to say that I run because I really, really like food and I can eat without difficulty again! I decided in February that I wanted to try and run the 5K at the Triple Crown Showdown this year because I wanted to challenge myself, and I also wanted to push the boundary and see if I could test the Myasthenia. I wanted to win. I downloaded a couple of different apps - one of them to help me learn how to run properly, and the other a simple couch to 5K program that slowly introduces you to running by training your endurance. It's important to have proper run form, and there are so many things to help people start running. When I realized that I might actually be able to do it, my mantra became to do it for all of us who can't.
Can you talk about the support you received from your friends, family, and medical team during your journey, particularly in training for the 5K?
My husband knew from the beginning that I was trying to train for it, but I didn't say anything else to anyone because I didn't want to feel like I let them or myself down if I couldn't do it for some reason - whether it be health or losing the mental battle. He always encouraged me, and even when I had a rough run he would say "but you still did it." When I realized that I was actually going to be able to do it, I started to talk about it more. I sent a photo to my brother after a training run and he immediately replied back "you're running again?!" He was so excited. My mom cried, and one of my closest friends was there to help coach me through it all. My in-laws were in shock that I was doing it, and encouraged me to keep going, though if I'm being honest, I think they couldn't really believe it until they saw it!
How has your husband been a pillar of support for you through your health challenges and recovery?
Oh my goodness! How can I even describe it? Unconditional. Even through my worst days he would carry me up the stairs when I couldn't walk them. He pushed me around in a wheelchair. He worked full time, came home to walk the dogs, cooked dinner, did all these things without complaint. I know it was hard for him. I could tell that my disease wasn't just wearing me down, but it was scaring him, too. He kept it all together for me, for us, for the fight. I don't know where I would be without him, nor do I want to know. I just know that I am so freaking lucky to have him in my life and I know without a doubt that he is my soulmate.
How has the Myasthenia Gravis Association contributed to your journey and supported you?
They gave me a community and made me feel welcome and recognized. One thing people don't talk about a lot with MG is the isolation you feel. Your loved ones, friends and family, none of them can really know what you're going through. MG is an invisible disease on so many levels... so even if they see the ptosis or hear the speech difficulties, they can't understand what it's like to feel so heavy in body and lost in the mind. With the MGA, you meet people who understand you, who don't judge you, who don't think that you exaggerate or fake your symptoms. You don't have to fight here; you just get to love. The MGA was always so unbelievably generous and thoughtful, reaching out to check in on me and countless others just because she cares. It makes me feel like I matter in a way I don't know how to really describe.
What does being a "snowflake warrior" mean to you, and how do you use your story to
advocate for others with Myasthenia Gravis?
I am a proud snowflake warrior. To me it means strength, perseverance, and courage. A year ago, I was struggling, I wanted to give up, I can't even say I was living, I was just existing. I hated feeling like no one could understand my pain, despite their desire to, and so I am loud and proud about my experience because if it helps just one person then it's a win. I want to give other MG patients hope that it will get better, that they are not alone, and maybe even inspire them to fight. If anyone needs me in their corner, whether it's to talk to them, a family member, or their doctor, the gloves are on, and I am ready to go to war for you.
What advice would you give to others who are battling Myasthenia Gravis and considering setting personal goals like training for a 5K?
You can do it. MG might win battles, but you will win this war. It's important to listen to your body and know that it's not a race of speed, but a marathon. Find your pace and know that you might have to start out way at the bottom, but you absolutely can climb your way up. It's as much a mental battle as it is a physical one, and it is hard. You will cry, you will want to give up, but you will not let yourself. Believe.
What are your future plans and goals, both in terms of managing your health and continuing your advocacy work?
I plan to keep running. I'm not fast at all, and I definitely didn't run the entire 5K this year, but I want to run it non-stop next year. So, I will keep training, keep working, and just run my race. I am hoping to be taken off Vyvgart this summer to really put the thymectomy to the test and tell MG to "f-off" for real this time. I will not be stopped. I hope that by sharing my story I can inspire others to listen more, to advocate more, to show more understanding for those of us who do suffer from MG. I have a fairly large tattoo of teal and snowflakes on my forearm, and I'm overly eager to share details about it whenever people comment on it. I'll do whatever I can to spread awareness and hope that I leave a lasting impression, even in passing. No matter how many times I've shared my story, I'll do so again and again for all who will listen.
Looking back on your journey, what have been the most significant lessons you've learned about resilience and perseverance?
How hard it is. People talk about it all the time, and it's super easy to tell someone to persevere and keep going, but it's incredibly difficult to walk the walk. There were a lot of times I wanted to give up, and I was ready to let MG win. I really don't know how to stress how challenging it was to fight this battle, not just with my body, but with my mind. Sharing the struggles with people who understand was something that did more for my mental health than I really know how to express. It's so important to validate the feelings and struggles of people with MG. That reassurance that I wasn't crazy, lazy, failing... that helped a lot, but it was so freaking hard.
How do you stay motivated and positive in the face of ongoing health challenges?
Truth is, I didn't always. In the hospital, I wanted to give up. I let myself feel those things, though. I didn't try to bury them or hide them away. I think it is vital to recovery to let yourself feel those things, to recognize the pain, the isolation, and that it just plain sucks. Don't let yourself stay there, though. If you are in that dark place, please reach out, be it to a friend or family member, or even another MG patient. Recognizing that I wasn't alone in the fight really helped... and if I didn't do it for me, then I should do it for someone else. I lost my dad in 2022, and that made the journey that much worse. But I knew he wouldn't want me to give up, and in my darkest moments, I would think about the things he would say to me if he were still here. It's a hard fight, but I'm a frickin warrior, and so is every other MGer out there.
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