SeAndrea’s Myasthenia Gravis Story

The story of SeAndrea

On June 3, 2003, the neurologist said, “You have Myasthenia Gravis”. I was 18 years old and had just finished my freshman year at Purdue University. That was an extremely tough and exhausting year. My first symptom was a droopy eyelid which happened over Christmas break of 2002. In January, I started to have double vision. I went to the eye doctor to see if it had anything to do with my glasses. She thought it was possible that it was Bell’s Palsy. Around April, I started experiencing weakness in my legs and had trouble climbing up to my bed in the dorm room. My parents thought it would be best to get more tests done. I had an MRI, CT scan, and blood tests which did not show anything wrong.
I came home for summer break, and more severe symptoms came. I went up the stairs and my leg would just give out from under me. I would try to lift my arms to do my hair, and I couldn’t keep them up. My speech started to slur when I spoke. My parents continued to try to find answers. I thought working out would help. I went with my brother to our high school gym. I was walking down the concrete stairs outside, and once again my leg lost feeling and I fell face down. I still went into the gym to workout on the machines not realizing this was only making my muscles weaker. When we were done, I went outside, and I couldn’t stand upright. My brother and I called my mom. She took me to the ER because she wanted answers.
The neurologist from the ER came back thinking it was Multiple Sclerosis but wanted to run even more tests to make sure. Finally, they figured out it was Myasthenia Gravis. The neurologist told my parents that she thought it would be best that I left Purdue and come home. I said, “No. I am not going to let this disease take over my life.” They all looked at each other and said they would let me continue, but I had to cut down my credit hours. I agreed.
The road ahead was not easier. I started taking mestinon which wasn’t enough to lessen the symptoms. After I started my Sophomore year, I started having problems swallowing which was extremely scary because I could barely swallow my food and sometimes my own saliva. It felt like I was choking. It was hard to do simple tasks like blink, chew, brush my teeth, put on my clothes, do my hair, etc. I lost about 10-15 pounds, and my parents wanted to know what to do to make this better. I eventually had to have IVIG treatment for 1 week so I could gain more strength. I was prescribed Cellcept and Prednisone which made me feel stronger. I had a difficult time trying to manage my medications, side effects, weight gain, schoolwork, and friends all at the same time. But I persevered and things started to get better in 2004. I lost the weight I had gained. My grades improved, and I finally felt like myself.
Now, I am 37 years old and doing well. I am married to my husband of 6 years and we have a teenage son. I also became a teacher which is very rewarding. I still have symptoms depending on the day. During 2020-2021, it was especially difficult due to the increased amount of stress from the pandemic and having to teach virtually which affected me physically and mentally. My facial muscles have weakness, so my eyes and mouth are affected the most along with having fatigue. I had to increase my medications and add a new one just to be able to chew, swallow my food, smile, and speak due to slurred speech. The right side of my face would droop. The hardest part is that I don’t always “look sick” so my neurologist wasn’t understanding the severity of my symptoms because he couldn’t see them. I went to see a new neurologist who sent me to get infusions for those symptoms to improve with the main one being swallowing. The infusions were successful, and I am able to speak without slurring, smile like normal, and chew and swallow my food. I am grateful because it was so draining and tiring trying to use those muscles with little strength.

I know to listen to my body when it is tired. Many times, I want to go out with friends or family but must stay in because I am fatigued. I have learned to accept that and just do what I can on a day to day basis. Some days are great, and others are bad where I have to lay down for hours to rest. I stay away from people or things that cause stress and unnecessary negativity. With work, I do the best I can and if I feel stressed, I take a step back and rethink what I can do to make things more effective and efficient. Stress will always be a part of life, but I try my best not to let it take over. I find ways to manage it and work it out. Some days I feel lonely, misunderstood, or sad about what I used to be able to do. I get misunderstood for mean, sad, stuck up, etc. I make sure to lift myself up and know that I am being the best I can be with what I am dealing with. I stay positive and my husband is always there to listen and does what he can to help. I lead an MG support group in my area so that is another way to stay uplifted.
I have tremendous support from my husband, parents, and close family and friends. I especially thank my parents for their love and care since I’ve been diagnosed. Without them, I wouldn’t be where I am today. Keeping God first and staying positive have been essential in living well with Myasthenia Gravis, and I am thankful that I can live a pretty healthy life. I still have my struggles and challenging times but continue to keep pushing forward. I want to share my story so people understand that although someone may “look great”, it doesn’t mean they are. You can’t always see what someone is going through. Ask first and don’t assume. Being supportive, understanding, and empathetic go a long way.