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How I Found Out I Had Multiple Sclerosis

Today we connected with Destiny about her experience with a multiple sclerosis diagnosis and how her healthcare team finally discovered the actual cause of her symptoms. Multiple sclerosis, aka MS, is a disease that impacts the central nervous system. Some of the common symptoms that people with a multiple sclerosis diagnosis experience include (Mayo Clinic):

  • Numbness or weakness in one or more limbs that typically occurs on one side of your body at a time
  • Electric-shock sensations that occur with certain neck movements, especially bending the neck forward
  • Lack of coordination
  • Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
  • Blurry vision

Below we share Destiny’s first-hand experience with an MS diagnosis and her advice for others who think they may also be affected by this disease:

Tell us a little about yourself

“I am a 24-year-old African American woman living with multiple sclerosis. I was diagnosed with multiple sclerosis on October 10th, 2018. 

I had gone out on a random night 5 months before, in May 2018, and after that, everything went left. My stomach started to hurt, but it was a feeling that I had never felt before. I was thinking, do I have food poisoning? I went to the hospital three nights in a row; the pain was unbearable. I didn’t understand what was going on, and every time I went to the hospital, they thought I was crazy because I kept telling them that I was in pain, but they didn’t understand why.

They sent me home every night, and all I did was cry because no one knew how I felt. I knew something wasn’t right. I finally did my research and found a gastroenterologist. He helped me in the best way that he could and recommended that I take probiotics. 

A few days later, I had to call my gastroenterologist because I could not sleep or walk due to the pain. I went back to the hospital and was able to have an endoscopy that day. They found a small amount of bacteria, but I was reassured that it was nothing to be alarmed about and was advised to continue taking probiotics. After that, I was referred to see a neurologist, who ordered steroids for me because I was also now having problems with numbness and tingling in my hands and feet. We all just thought maybe this could be food poisoning, but we really weren’t sure. 

A few months later, it was a typical day at work, and out of nowhere, my right eye felt weird and I was seeing slightly blurry; but I thought to myself, maybe I’m just tired.  The next day my vision was very blurry, and I knew that I needed to make an appointment. The eye test stated that the vision in my right eye was completely gone. He told me that this could possibly be Multiple Sclerosis and I should make an appointment with a neurologist as soon as possible.  He ordered an MRI and more steroids, which thankfully brought my vision back.”

How did it feel to get the diagnosis?

“The nurse called me while I was at work and stated that I needed to come to the office the next day. I begged her to tell me why, but she couldn’t.  As soon as I hung up the phone with the nurse, I called my mother, and we talked on the phone and prayed the whole night. The next morning, we went to the office together and sat there holding hands, waiting for an answer. My neurologist walked in and broke the news to us, stating that I had multiple sclerosis. My mother and I were in a state of shock and cried. My first thought was that I would never be able to walk again.

That felt like the beginning of my new life.” 

How has multiple sclerosis impacted your life?

“I am currently taking the medication Ocrevus through IV every six months. This journey has been scary, but also made me a stronger woman. I was given this battle, and I will share my story to help anyone who may feel alone, discouraged, or hopeless.  I have MS, but MS doesn’t have me. I am very grateful to have a group of supportive people around me and blessed to have my mother, who has been at every doctor’s appointment, joined a support group, and does research every single day.”

What advice do you have for someone with a new multiple sclerosis diagnosis?

“It took me almost two years to share my story.  I was afraid of being treated differently because of my new life changes. But I remembered that no matter what, not everyone will accept or understand you, and that’s okay. Just make sure you accept and love yourself. If you are going through anything please don’t be afraid to talk about It or ask for help. #Wegotthis🧡”

We are so grateful to Destiny for sharing her story. The Mayo Clinic put together a list of symptoms, causes, and complications here. Living with chronic illness is quite the journey – it’s not something that happens to you once, but a world that keeps changing over time.  It can be tough for our healthy and able-bodied Friends in the Fight™ to understand what it’s like.  Mighty Well was created for patients, by patients, but it is also our mission to build positive relationships with the people in our lives who want to understand. Do you have a story you would like to share? Join our community below or leave a comment below.

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