May 24, 2022.

After we arrived home the previous night following the MRI, I went straight to bed. I slept the high of the anxiety meds away and woke a few hours later, wide awake. I knew that there would be no more snoozing in my immediate future, so I spent the rest of the night online. I researched the neurologist that I just met, his practice, all my symptoms, and the ‘what ifs’.

My neurologist was scheduled to be at a satellite location, so we made the trip to Durham the next morning. We checked in at the doctor’s office and waited to be called back. Once in the exam room, we sat silent, side by side, my husband to my right, holding my hand. Before the doctor came in, I already knew what he was going to say (darn you, Google). Too many things started to make sense. Months of extreme fatigue, my vision worsening in very short periods, bone and muscle pain, numbness, brain fog, and headaches. I couldn’t imagine that a vitamin deficiency could cause all this, and if it did, I had no improvements in symptoms since starting the additional supplements. In fact, I was getting worse. It had to be something else entirely. Even though I knew what the doctor was going to say, I knew my husband was holding onto hope that everything would be ok, and there would be a simple and easy solution for a quick recovery. I remember sitting there thinking this would be the last time I didn’t know what was wrong. In just a few minutes, we would know for sure about the fight we had in front of us. Life would officially change forever (insert dramatic music, haha).

I had only met my neurologist the night before, but I already liked him. He was professional and seemed very compassionate. He took his time with us the previous evening, and we never felt rushed, even though it was well past office hours. He was young, yet extremely knowledgeable and didn’t jump to conclusions. I didn’t feel like ‘just another patient’. I felt protected, and that I was going to be taken care of, no matter the outcome. The best part though, was his personality. The day before, I skipped the hair maintenance and opted for a hat. It was a good idea until the physical exam before my MRI since he asked me to take it off. Of course, I commented how awful I was going to look, and when I removed it, he agreed. It sounds terrible, but the way he said it in a joking manner made me feel better. He was funny and down to earth. I was so thankful that he was in the office the night that I came in.

My neurologist walked in with a file, sat down on the stool, and said, “Sorry kids. I’ve got crappy news.” Multiple Sclerosis. The funny thing is, I really wasn’t shocked. I was terrified. I was emotional. I cried. I was a hot mess. But I wasn’t shocked. And I am sure some people will think it was completely unprofessional how the news was given, but he hit the nail on the head when he said it. Crappy is definitely one way I would describe it. Or sucky. That’s a good one too.

We spent the first part of the appointment going through my MRI scans. It’s so odd looking at your brain and spinal cord on a computer screen, especially when the doctor is pointing out what is abnormal about it (insert smartass comment from my husband about my brain, because even while we were sitting there, he made one to try and lighten the mood.)

The MRI showed more than 20 lesions in the periventricular and subcortical white matter of my brain (the area responsible for the important stuff like language, motor skills, and thinking). Most looked as if they had been present for some time, while one appeared newer and active. My spinal cord showed 2 lesions located in areas affecting the nerves that controlled sensation to my arms, fingers, and hand and one of the nerves that control my diaphragm (the muscle that helps you breathe). Lovely.

As my neurologist started talking about the disease, I realized my knowledge of MS was very limited. I didn’t know anyone affected by it, and I had a preconceived notion of what the lives of those diagnosed were like. I’ll be honest, it was bad. If you don’t know much about MS, then I bet you are the same way and imagining the worst right now. Oh my God, will she be able to walk? Can she work? Will she be bedridden? She won’t be able to leave the house ever again. Wheelchairs, walkers, and canes, oh my. And so on. Honestly, why would you think anything different? If something is not affecting you, or someone close to you, you typically don’t educate yourself on it. Granted, this isn’t always the case, but most of the time, it is. When we personally face something new and unknown, we tend to become experts on the subject at hand. Ask me about ectopic pregnancy, skin cancer, or now, MS, and I can talk about them in great detail since I have been through them myself. However, if we are discussing Celiac disease, diabetes, or Crohn’s, I can’t talk at length since I know only basic facts and information. It’s human nature to focus on ourselves and those closest to us. Lord knows we have enough to deal with daily without adding more to it unless we are forced to.

We spent the next hour going over the disease and the next steps. Bloodwork, pain treatment, physical therapy, and disease-modifying treatments. So much information. I’m sure my doctor could read the panic and terror on my face, as with most newly diagnosed patients. The worst-case scenario questions that I just wrote about were filling up my brain. It was all so overwhelming. Towards the end of the appointment, before heading to the lab for more testing, I was handed a packet that covered everything we talked about and much more. Of all the things I remember about our meeting that day, the one that stood out the most was the comment the doctor made to me shortly before we left. He said, “I expect to see you in 20 years walking in for your checkup and looking just like you do today.” That comment gave me hope. That’s what I felt at that moment, and what I still feel today. Hope. Hope that it was caught early enough. Hope that the therapies work at delaying the disability often caused by this disease. Hope that a cure will be found in my lifetime. Hope that I respond to treatments. Hope for a long future with my family. So much hope, along with faith and love. See what I did there? A good student tying it all together for you.

We left Durham and planned to head back to the Raleigh office to visit the infusion center. Since the pain I was feeling was characterized as a severe exacerbation or flare-up, my neurologist recommended a short course of high-dose corticosteroids to reduce the inflammation and bring the relapse to an end more quickly. I was scheduled for a three-day course of intravenous steroids. We left the office and started to make phone calls to our parents, who were awaiting the news. Life was officially changed.