“One day, in high school, I was in my Science class when my legs started to feel numb. I raised my hand and in front of the class, I told the teacher my legs felt like pins and needles. With a shocked look on her face, she said, ‘Oh no, that’s not good,’ and called in the Vice Principal to the classroom. He took me into his office and called the ambulance. The paramedics surrounded me and I felt so overwhelmed and worried that I started to panic and cry. They brought me to the ER and told me it was anxiety. They dismissed my other symptoms and only focused on my panic attack. Later on, I got a bill in the mail for $1,000 for the ambulance ride even though my high school was across the street from the hospital. I was left feeling concerned, confused, and broke.
For the next few years, I would have days with weird symptoms, but it would come and go. Then there came a point where it was happening more frequently along with new, unusual symptoms. In 2018, I was working at Trader Joe’s. I would clock into work and immediately want to clock out. I would feel extremely fatigued, uneasy, weak in my muscles, headaches, and overall just feel a bit off. I also had these weird visual symptoms of seeing afterimages, light sensitivity, and seeing static like when a TV loses connection. I ended up quitting my job since it was so hard for me to make it through the day. I went to so many doctor’s, ER’s, Urgent Care’s, and specialist’s, and no one could figure it out. Finally, I saw an Ophthalmologist who diagnosed me with Visual Snow Syndrome, a rare incurable neurological condition that affects your vision. However, there is not much research on it and there’s no treatment for it. I was happy to finally have a name for my visual disturbances, but it did not explain my physical symptoms. I knew there was something more.
With so many other draining symptoms and no answers, I felt a bit defeated. So I pushed myself to do things that would make me feel accomplished and proud of myself. Anything I was afraid to do, I went for it and did it anyway. I graduated from Borough of Manhattan Community College and decided to continue my education at the State University of New York at New Paltz, my dream school. Not only did I get in, I also had the incredible experiences of studying abroad in Guatemala for two weeks and New Zealand for a full academic semester, along with earning multiple scholarships. Coming from a low income family, it was such a huge accomplishment. Everything felt like a dream and I was seeing the world through my unique visual lens. Of course, that couldn’t last too long.
While in New Zealand, in 2019, I started to feel those physical symptoms again. The extreme fatigue, muscle weakness, body aches, and more. It would be hard for me to make it through the day, let alone get out of bed. I was also having cognitive problems. It was hard for me to focus, understand new material, or even remember what I did the day before. It would take me an hour to read 10 pages of a book. Everything I thought I knew how to do, suddenly did not make sense anymore. I was feeling like I was losing control of myself and my abilities. I saw a few doctors over there, but had to wait until I got back to the states to see specialists.
I came back to SUNY New Paltz in January 2020, after a semester abroad, to finish my senior year. I wanted to spend my last semester with my friends and truly soak up the college experience before it was over. However, I had to spend most of my weekends going back and forth to New York City for doctor’s appointments. In February, I was finally referred to see a neurologist who suggested I get an MRI of the brain. I begged the universe for answers. A week or so later, I was in the train station when I got a call from the neurologist. With the loud noises from the trains passing by and the in and out service I had on my phone, I did my best to hear what the neurologist was saying. She told me my MRI showed multiple lesions in my brain which looked like it may be Multiple Sclerosis and I should see an MS specialist as soon as possible. I remember feeling so confused, stressed, and emotional, standing in the middle of the crowded MTA platform.
A few weeks later, I saw the MS specialist and got another MRI of the brain, along with an MRI of the thoracic and cervical spine. Around this time, Coronavirus was starting to become more serious. My school decided to continue remote with online learning. I had to move out of my dorm and back home with my family. While in quarantine, I noticed I got a notification on my phone about new test results. I read them but didn’t understand what it meant, so I messaged my doctor to give me a call to explain them. Since I had an appointment scheduled a few weeks later, the nurse told me I will find out then, virtually. However, I was so anxious I insisted the doctor give me a call as soon as possible. I needed to know. Do I have MS or not? My doctor responded in a dry tone, ‘Yeah, your MRI results show that but your symptoms do not. You’re fine.’ Her response made me feel like she didn’t believe me. Even after my test results told her so. I didn’t know how to accept this diagnosis because it seemed like my doctor didn’t even want to accept it.
My doctor started me on an oral medication called Tecfidera. She warned me about the Tecifdera flush; this was not something I could be prepared for. Looking like a tomato, my face and chest got so red! My body felt like it was on fire. I would feel pins and needles throughout my body. It was not for me. I told my doctor I needed to switch to a different form of treatment. I switched to Tysabri infusions. Once a month, I go to the hospital to receive an hour long infusion, along with an hour of observation. My first infusion was scary since the hospitals were not allowing guests at the time. Sitting in my infusion room, alone, it finally hit me. I have MS and I am going to have this forever.
There was so much to adjust to. Online learning, quarantine, and a new diagnosis. It was tough to fully grasp and understand what was happening. I was struggling with my online classes but thankfully, I had support from SUNY New Paltz’s Disability Resource Center. I also was completely transparent with my professors about my diagnosis and they were understanding and allowed for me to have extensions. I did not know anyone with MS so I did not know who to talk to that could understand what I was going through. I decided to share my diagnosis on my personal Instagram and had the caption end with, ‘If you or anyone you know has MS, please reach out to me so we can connect and support each other. With everything being so uncertain in the world right now, let’s be kind to each other and not forget to check in. You never know what someone is going through.’ To my surprise, many of my followers knew someone with MS and were connecting me to them! I no longer felt alone in my experience.
I found so much power in sharing my story on social media, so I decided to create an Instagram page dedicated to sharing my MS journey, called The Light of Lina. I post about my diagnosis journey, treatments, symptoms, and I even talk about Visual Snow Syndrome since it is still very much a big part of me. The best part about being diagnosed with MS is joining the wonderful, supportive, and uplifting MS community. Everyday, I read a post from a fellow MS-er who motivates and inspires me to push through the day. By sharing my own story online, I hope to inspire others to keep advocating for themselves and not give up on their health. You know your body. You know when something is not right. Keep asking questions. One day, you will find a doctor who will do the proper tests and find the answers. Keep going. Someone will believe you.”
This story was submitted to Love What Matters by Lina of New York City, NY. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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