I Was Diagnosed with Multiple Sclerosis at 23- Here’s Why I’m at Peace

Long Post Ahead | My MS Diagnosis

I’ve been keeping my multiple sclerosis a secret for the past 18 months. Why have I never shared it? That’s more of a story for later. It’s a bit nerve-wracking to share something so personal. It’s scarier when I didn’t even really know what I was dealing with yet. I guess I never wanted people to give me constant sympathy or treat me like I’m fragile. Grad school was coming to an end, I had recently gotten engaged, and blogging was better than ever. I thought sharing this would somehow cancel out all the good and push the focus towards something I might not have been ready to accept yet. Hearing how actress Selma Blair shared her story and reading how other bloggers deal with chronic illnesses, helped give me the push I needed. I’ve always been an advocate of sharing our health stories to encourage others and knew it was time. During Thanksgiving weekend,  I ultimately decided that the start of 2020 is the perfect time to share my story. My name is Tomi and I was diagnosed with Multiple Sclerosis at 23.

What is Multiple Sclerosis?

Multiple Sclerosis (aka MS) is an autoimmune disease. At some point, the body’s wires get crossed and think that the tissues (myelin) surrounding the brain and spinal cord are dangerous. The body begins to attack itself and causes neuromuscular symptoms like tremors, tingling, numbness, depression, vision loss, muscle paralysis, and more. And over time, the disease can degenerate the nervous system. Currently, there is no cure for multiple sclerosis.

The funny thing about this (if you can call any of this funny) is that there are demographics known for being more susceptible to MS. White women who live in colder climates and have some genetic linkage to the disease are the most common causes. You should’ve seen the look on my neurologist’s face as he saw this healthy, 23-year-old Nigerian-American woman. At the time it seemed so random when it hit me in San Francisco. But now I understand that this battle belongs to the Lord. Here is my story:

MS Symptoms at 23- The First Flare Up (August 2018)

I had a pretty exhausting summer. In the spring semester, I struggled with a class in my MBA program. My advisor suggested I retake it in a couple of weeks to keep my current graduation schedule. So, in addition to working 50 hours a week at my dream job in Silicon Valley, I was taking 3 classes for my MBA. Add that into the perpetually gloomy weather in the Bay Area during the summer and being 3000 miles away from my family and friends, I could slowly feel myself falling into depression. Of course, you’d never know it looking at these intern diaries.

Thankfully, I had only two weeks left and was enjoying my time finishing up the final intern projects we had to present to our team. Sunday night, I was exhausted, but no more than usual. However, when I woke up, I knew something wasn’t right. Wiping the sleep from my eye, I stumbled out of bed because both of my legs were tingling. Odd. I assumed they had just fallen “asleep.”  I continued my morning routine and stepped in the shower only to realize how cold I was despite the hot water- I could barely feel it on my legs. Still, I chalked this up to not getting enough sleep and went about my day. I even mentioned it to Will that night and he suggested I probably just hit a nerve while I was sleeping (I tend to move around a lot lol).

The next day, the sensation had moved even further up my body. And I had watched enough episodes of Grey’s Anatomy to know that I had a big problem. I called my mom and she told me to skip work and go to the ER immediately. I took an Uber and found a hospital just a couple of blocks away in North Beach, but was dismissed after a few trivial tests 2 hours later. None of them included extensive blood work, a neural exam, or even a doctor’s visit. I called my mom again and she immediately booked a flight for me the following morning. I didn’t tell her then, but the urgency in which she was telling me to do things only heightened my anxiety.

From Silicon Valley to Columbus ER 

When I woke up Wednesday morning, the numbness had reached all the way to my neck. That means that in just 3 days, whatever was happening to me wasn’t slowing down.

I bawled the entire way to the airport (probably forever traumatizing my Uber driver.) I remember praying, “God. Please don’t let me be paralyzed and die alone on this 5-hour flight back to Atlanta. I need to tell them goodbye.” Dramatic, I know. But at the rate I was losing sensation in my body, I assumed it would hit my lungs or my brain next. At this point, I needed a wheelchair and assistance throughout the airport and boarding the plane. I bought WiFi on the flight so I could update my parents with new symptoms and nervously watched the clock.

After what felt like 24 hours, I landed in Atlanta and was quickly picked up by my parents and sped the entire 1.5 hours home. Will drove through the night from Charlotte and happened to meet us at the ER in Columbus about the same time. *note: My mom is a family doctor and used to work at that hospital so she had plenty of friends who were able to get me in quickly versus a longer waiting time in Atlanta.

How Do They Test for Multiple Sclerosis?

They ran the full gambit. Blood work, MRIs of my brain and spinal cord, neural exams, memory tests, urinalysis, and the scariest one- a spinal tap. All signs pointed to a pretty clear diagnosis. The 12-13 white lesions on my brain scans confirmed it (as well as a second opinion a month or so later.) I was now living with multiple sclerosis. I stayed in the hospital for a few more days being pumped full of steroids before I was sent home for recovery.

The Aftermath of My MS Diagnosis

The next week, I celebrated my 24th birthday from my couch since I was too weak to move. I kept posting photos like this to my Instagram account to make sure nothing looked off. But deep down I was trying to figure out what my future with multiple sclerosis looked like. Should I go back to school this semester or risk graduating later? Will I be able to drive myself around? What if I have an attack while living by myself and can’t move from the bed? Right after being discharged from the hospital, I developed something called, “The MS hug.” I can only describe it as the sensation of someone pulling an ace bandage wrap tightly around your torso for 24 hours straight. It made it hard to breathe and regardless if I was sitting or laying down, I was in constant pain. My legs and feet were so numb that I walked like a baby deer for weeks until I got my strength back.  Because MS can affect ANY muscle in your body, it was also attacking the gastrointestinal tract. Honestly, cutting out bread from my diet for 2 weeks was the worst part of all of this (kidding, slightly).

In the end, it took me about 5 weeks to fully recover from that initial MS flare-up. And I haven’t had one as debilitating (1.5 years) since then. Thank you, Jesus!

How I Am Today Living with MS

Now, I get muscle fatigue pretty quickly if my body is in the same position for too long. That includes everything from long car rides to holding up my arm to take a selfie (HA. Again, I wish I was kidding.) The full-body aches and tingling come back when I get less than 8 hours of sleep. However, there are days when I don’t have a clear “trigger” but still get symptoms, too. 

All in all, there’s a long list of possible multiple sclerosis symptoms and I’m learning every day. Like the discovery that I didn’t have ADHD that just sporadically appeared during college, rather, the lesions most likely started to develop during that time and affect my memory and focus. It could get worse over time or I could never have a flare-up again. Only time will tell. But I’m blessed to have various health care professionals in my family (both my mom and sister are practicing family medicine physicians) to ease any fears I have in the meantime. I’m also thankful that I have “good” health insurance. Between the bi-annual checkups, prescriptions, MRI scans, and more, I could have annual health care costs of $100,000 (not including primary care or women’s health). Unfortunately, that’s not the case for all Americans with MS.

Why I Thank God for Being Diagnosed with MS in my 20’s

You’d think hearing that I have a life-altering disease with no cure would throw me into another depressive state. But after 72 hours of terror, I was relieved at the outcome. It wasn’t cancer. It wasn’t terminal. And the neurologist tried to assure me that with proper care, I can avoid flare-ups like this happening again in the future. My initial questions simply came from a sense of practicality and less from a true fear of the unknown. My current MS medication only came out on the market in the last 5 years and is already hailed as the best option of the 3. With the advancements made in modern medicine every day, I believe I’ll live to see a cure.

Now that I know this is the ministry God has given me, my approach to life is a bit more freeing. I don’t take my health for granted. My family continues to be my #1 priority. I’m a stronger advocate for my needs as a patient when with medical professionals. If I had the courage to do so, I would’ve pushed for more tests in San Francisco when I knew without a doubt that something was wrong with my body! The entire experience has opened my heart to have more empathy in general. But it has specifically opened my eyes to the struggles others have with chronic illnesses, disease, and healthcare issues throughout the world.

I know that God has a plan for me. And in everything, I give thanks to Him. It hasn’t been an easy journey by any means, but I’ve found my peace and comfort through this situation in Christ. I know that if this testimony helps bring just one more person closer to Him, it’ll be worth it.

If you made it this far, bless you. LOL. I’m so thankful for everyone who reads this blog and continues to support me. Please let me know if you have any questions relating to Multiple Sclerosis, I’d love to assist any way I can. ❤️

LET’S KEEP IN TOUCH!

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