From Misdiagnosis to Clarity: Living with Multiple Sclerosis in Nigeria

Every year, World MS Day brings people together to raise awareness and challenge the barriers faced by those living with multiple sclerosis (MS). This year’s theme, "Diagnosis", focuses on the power and importance of early detection. In line with this, we bring you the story of Stephanie Douglas, a marketing content creator at Participant Assistive Products, who was diagnosed with MS in 2021. Her journey is one of pain, resilience, and hope, a reflection of what too many people in Nigeria and other low-resource countries go through when a diagnosis comes too late. Below is her story in her own words. 

Before the Diagnosis: When Fatigue Was Just Fatigue

Before I got sick, I had never even heard of multiple sclerosis. The term didn’t exist in my vocabulary. I was like most people, busy with work, life, and everyday responsibilities. Then came the fatigue. I thought I was just overworking myself. I’d rest, and feel a bit better, but then came the headaches. Still, nothing seemed serious until I started feeling sick.

Then came the fever, one that forced me to visit the emergency room.

At the first hospital I visited, I was diagnosed with malaria, like most Nigerians are when they have a fever. I took the medications and waited to get better. But nothing changed. I felt ignored and neglected, as I wasn’t getting enough medical attention, so I transferred to another hospital. That’s when things started to spiral.

A Series of Misdiagnoses and a Worsening Condition

At the new hospital, I stayed for weeks. Doctors ran several tests, but no one could tell me exactly what was wrong. My symptoms got worse. I began to lose sensation in my legs, first my feet, then up to my belly. My legs would spasm uncontrollably, and when I complained of the tingling, stabbing feelings, the response I often got was, “It’s all in your head.”

As my health declined, I lost bladder control. The hospital staff diagnosed me again, this time, with kidney stones.

Over two months, I visited three different hospitals. None could give me a correct diagnosis. Out of desperation, my family took me to receive traditional treatment. I drank herbal concoctions. My skin was cut with a razor blade, and a black substance was applied to the wounds. It was painful, terrifying, and ultimately made me worse. I could no longer feel or move my legs.

Taking Matters into My Own Hands

I knew something had to change. I began to research hospitals myself. That’s when I found Cedarcrest Hospital in Abuja, and decided to move to a different state to seek better care.

At Cedarcrest, I finally met a neurologist who listened to me and took my symptoms seriously. He warned me that because I had gone a long time without the right treatment, there was a high chance I might not regain the use of my legs. Still, he didn’t make me feel hopeless.

After weeks of testing and observation, I was finally diagnosed with Multiple Sclerosis (MS).

Understanding MS and the Importance of Early Diagnosis

Multiple sclerosis is a lifelong neurological condition that affects the brain and spinal cord. It causes a wide range of symptoms, including fatigue, numbness, muscle spasms, bladder problems, and mobility issues. MS has no cure, but it can be managed if diagnosed early.

Unfortunately, in places like Nigeria, the lack of awareness and trained specialists often means that people are misdiagnosed for months or even years. During this delay, the disease quietly causes irreversible damage.

For me, getting a diagnosis brought mixed emotions. I was devastated by the news, but also relieved. At least I finally knew what was wrong. I could stop guessing. I could start fighting.

The Emotional Toll and Finding Support

My friends and family took the news harder than I did. Maybe I had become numb from all the pain and confusion, or maybe I was just focused on surviving.

But one thing that kept me going was the support I got from my loved ones and the hospital staff. My neurologist and the nurses made me feel seen and heard. Every symptom I described was taken seriously. I wasn’t crazy after all. What I was feeling was real.

One of the hardest things I had to come to terms with was becoming a wheelchair user. For months, I refused to use one, hoping my legs would eventually start working again. But nothing changed. I was doing more harm than good. Eventually, I gave in, and it was the best decision I made for my health and independence.

Living with MS in a Country That Hardly Talks About It

There’s very little awareness about MS in Nigeria. People still walk up to me and say, “Oh, what you have is a stroke,  just with a fancy name.” I can’t count how many times I’ve heard that.

My neurologist introduced me to another patient who runs a support group for Nigerians living with MS. It was life-changing. For the first time, I didn’t feel like a strange case. I wasn’t alone.

I have Relapsing-Remitting MS, which means I have periods of remission where I feel okay, and then I relapse suddenly, sometimes so badly that I end up in the ICU. Each relapse can leave new or worsened disabilities. Over time, I’ve learned that MS is different for everyone. What works for one person might not work for another.

Managing MS: A Daily Battle

There are days when my brain feels foggy. Days when I can’t think clearly or focus. Some days I have tingling all over my body. On other days, I experience all the symptoms at once.

I’ve learned to listen to my body, to rest when I need to, and to take it one day at a time. It’s not easy, but it’s my reality, and I’ve accepted it.

Why Early Diagnosis Matters

Early diagnosis can change everything. It can slow the progression of the disease. It can save mobility, preserve independence, and prevent long-term damage.

My story is just one of many. But too many Nigerians are still misdiagnosed, mistreated, or made to believe their symptoms are imaginary. The cost of delayed diagnosis is high, not just physically, but mentally, emotionally, and financially.

As we mark World MS Day, I’m calling on:

• The Nigerian government to invest in training more neurologists and specialists.

• Hospitals and clinics to improve awareness and diagnostic capabilities for neurological diseases like MS.

• Communities and families to be supportive and avoid dismissing symptoms they don’t understand.

• You, the reader, to educate yourself. Share this story. Ask questions. And if you or someone you know is experiencing strange, persistent neurological symptoms, don’t ignore them. Push for answers. Push for tests.

• 
  

You Are Not Alone

MS is not a death sentence. With the right treatment and support, people with MS can live full, meaningful lives. But we need early diagnosis. We need awareness. We need action.

To everyone living with MS, especially in low-resource settings like Nigeria, your story matters. You are not alone. And together, we can push for a better, more informed future.