I found out I had MS in the summer of 2020, and it all happened in just four weeks.
It started with this odd feeling when I took off my slippers on my parents’ veranda. I could feel the warmth of the wood under my left foot, but my right foot felt nothing. I brushed it off, thinking maybe it was stress or from my workout earlier. But that evening in the shower, it got worse—I couldn’t feel the warm or cold water on my right foot, leg, or thigh.
I called my local health clinic, and they told me to call back if things got worse. The next morning, they did. So, I booked an appointment. The nurse mentioned that if I were older, she’d have sent an ambulance thinking it might be a stroke, but since I was young, I shouldn’t worry and just follow up if needed. No tests or anything at this point.
Meanwhile, my dad and I were planning to surprise my mom with a new puppy. After visiting the clinic, we picked up the puppy. On the way home, the puppy bit my thigh, and I didn’t feel it, even though it drew blood. I called the emergency number, and the doctor said to get to the hospital immediately. So, we had to leave my mom with a new puppy while Dad and I rushed to the ER. Sorry, Mom!
Given it was COVID-19 times, I worried my symptoms might not be taken seriously. But the ER was empty, and a full team of doctors examined me. Lucky me!
I failed the balance test, and my eyes didn’t focus properly during the eye exam. They did a lumbar puncture, which went wrong twice—so painful. They sent me home with a warning to prepare for the worst. Not very uplifting, right?
Over the next four weeks, I had to recover from the lumbar puncture and wait for MRI results. After the MRI, I was called to the hospital’s neurology floor and told I had MS. The MRI showed a lesion in my brain that explained the loss of sensation in my right lower body. The blood tests and spinal fluid analysis confirmed it. But it was early stage, which was good news. I was scheduled to start treatment with Rituximab.
In just two days, I lost the feeling on the right side of my body. It started slipping away under my right foot, then slowly spread until my entire foot, leg, and thigh were affected. And even after four years, it’s still a bit numb.
When I got the diagnosis, it was a weird mix of feelings. I didn’t really know what MS was, so my mind went straight to TV shows like “The Affair” and “Elementary,” where MS seems like a quick death sentence. I even thought of ALS and wondered if I’d need a wheelchair soon. It was surreal, you know? Suddenly realizing I’m not invincible, especially when we always think, “that would never happen to me.” But mostly, I just couldn’t stop thinking about how my mom would take it.
It was emotional! Everyone seemed to see MS as a death sentence, almost like they were already grieving for me. It hit me that none of us really understood what MS was or what it meant to live with it. That’s when I decided to start talking openly about having MS, to show a different side of the illness. I’m lucky that my MS hasn’t majorly affected me, and I wanted to be a positive voice while still acknowledging the real challenges of living with the disease.
Looking back, I’m sure there were warning signs I overlooked, but it’s tough to spot them when they feel like regular things—period pains, soreness from working out, or stress.
I’d been dealing with brain fog for years, but I chalked it up to burnout from a few years before. It wasn’t until the symptoms became more physical that I finally sought medical help.
In the beginning, I kept my MS diagnosis to myself. I was scared that if my workplace found out, I’d lose my job. But, as anyone who knows me will tell you, I tend to overshare. Eventually, I had to tell my manager and coworkers to explain my hospital visits and frequent absences.
It was such a relief! At first, everyone was shocked, like I’d just announced I was dying. Then, one of my coworkers came up to me with questions. They ended up telling me they also had MS but had kept it a secret from everyone except their family. They said they’d never met anyone with MS who wasn’t ashamed or afraid to admit it. I explained that while MS is hard and I have my down days, I refuse to let it control my life. I’m fortunate that my MS isn’t as severe as others’, and it’s a privilege to be able to speak about it openly.
I won’t lie—living with MS is tough. Very tough! Since my first relapse, I’ve been dealing with nerve pain and tremors from losing feeling in my right lower body.
But the hardest part wasn’t just having MS; it was going through four years of aggressive treatments that I probably never needed. The side effects from the medication were worse than my actual MS symptoms, and I blamed it all on the MS until I stopped the treatment and started taking Amitriptyline for the remaining tremors and nerve pain. The difference was like night and day! Even after stopping Amitriptyline, I feel better than I have in years.
I still battle fatigue and brain fog. It’s frustrating not fully understanding my diagnosis and its causes. Some days, it feels like I’m walking through a thick fog, and I just want to hide away and rot in bed. However, starting this community and connecting with others who share similar experiences has been incredibly comforting.
What changed my life the most was spending a month thinking I might die between the first ER visit and the doctor appointment where I got the news that I had MS. That experience gave me a new perspective on life. I realized I can’t live in the future or the past—I need to live in the present because life truly isn’t guaranteed. I knew this before, but it doesn’t really stick with you until you experience something like this.
So, I’ve started to enjoy life more than ever before. I’ve learned to appreciate the small moments and find joy in the everyday, even on its bed-rotting days because just eating a cinnamon bun and playing some video games is fantastic. And then I know that tomorrow is a new day and it’s okay to take care of myself.
Yes, MS has changed my daily life in ways I never imagined. But it has also made me more grateful, more present, and more determined to live fully. And for that, I am thankful even though I also want to punch MS in the face. But gotta think positive, right?
Cinnamon buns. No, that’s only 10% of my motivation.
What really kept me moving forward was finally moving to my favorite city. I had dreamed of moving to a bigger city for years but kept waiting for the perfect moment. But if there’s one thing MS taught me, it’s that I should do what I want now, not later. Being in a city that’s so full of life breathed new energy into me.
My dog helps so much, too. On days when I feel like I can’t get out of bed and want to sleep for a thousand years, she’s there, petting me with her little paw, begging for a fun morning walk, and I could never let her down.
Some years ago, I would have said you should live for others if you can’t for yourself. Despite having MS and feeling how much it sucks, I am now living for myself and wanting to live a great life no matter what.
In my late teens, I struggled with depression and burnout, which left me feeling pretty gloomy and unexcited about life.
When I got my diagnosis, it was like a wake-up call. I realized that I actually do want to live and be happy, and to experience everything life has to offer. It was like being splashed with cold water, making me decide to go after the things I’ve always wanted to do now, instead of waiting for the “right” time.
The diagnosis also made me realize how vulnerable we are and how important it is not to be alone. We all deserve happiness and connection. I hope to inspire others to see that too, even if it took a scary diagnosis for me to understand. Life is too short to wait.
If I could go back and give myself advice at the time of my diagnosis, I’d say exactly what I now share with others about MS: it’s not a death sentence, and you’ll have a wonderful life despite it.
But I’d also be honest about the tough times. MS can really suck sometimes. I’d remind myself that tough times are a part of life, diagnosis or not, and we all face our own battles.
I’d strongly encourage myself to seek out support groups and consider therapy, even if they seemed hard to find back then. While doctors give the diagnosis, they don’t always offer the emotional tools to handle it. Therapy could have really helped me process all the emotions that came with the news.
What were some of the first signs or symptoms that made you realize something might be going on?