In August 2021, I learned that things happen that are out of my control. I’m not as invincible as I thought.
First, a Crashing Sound in My Head
It was the middle of January in 2018 when I woke up at about 4 a.m. to what sounded like a train wreck. We live near a train track, so I got out of bed and looked out the window. I didn’t see anything, so I thought it was a dream — until a few days later, when it happened again while I was awake. It seemed loud, but it felt like it was in my brain. I assumed that maybe a migraine attack was setting in, even though I had never had that sensation happen before when I’d had a migraine. After that day, it didn’t happen again.
Then, a Numb, Tingly Leg
A few months later, my husband and I were lying on the couch watching a movie, and he was rubbing my legs like he always does. Not long into the movie I noticed that I couldn’t feel him touching my right leg. That feeling (or lack thereof) lasted throughout the whole movie. When I got up to walk, my leg was still numb but also tingly now. I assumed that my leg was “asleep,” until the sensation continued for hours, days, even weeks, almost nonstop. I’ve had iron-deficiency anemia, which can cause this to happen, all my life, so I brushed it off and took my iron medications. Just like the head issue, it eventually stopped. When these things were happening, I got lost in the web, googling my symptoms to see what might be going on with me. Let me just say that the internet can be a dark place when doing this, but also helpful. As I searched, everything kept pointing to multiple sclerosis. But I didn’t believe that, because I didn’t think it could happen to me — just like I’m sure many other people have thought, too, before being diagnosed.
Next, a Feeling Like My Face Was Being Electrocuted
In May 2021, I woke up from a deep sleep feeling like I was being electrocuted on the left side of my face. This was my wakeup call (no pun intended). It happened a few times that day and then intensified in the days to come. I couldn’t eat or talk much without triggering the pain. Brushing my teeth made it worse too. This feeling was something I wouldn’t wish on my worst enemy. Imagine chewing on tinfoil and being struck by lightning at the same time. That’s how I’d describe it, but even that doesn’t do it justice. To say this was scary would be an understatement. I talked to my doctor, and he immediately said it was trigeminal neuralgia. Okay, I’d never heard of that, so now what?
Many Tests Later, All Results Suggested Multiple Sclerosis
I started on nerve blockers, and I had an MRI, which showed some alarming signs that something bigger was going on. I was sent to a neurologist, who confirmed trigeminal neuralgia, but after I told him about other recent symptoms, as well as my past symptoms, including tremors, blurred vision at times, and constant neck pain, he ordered more tests. I had two more MRIs, blood work, and a lumbar puncture (spinal tap) to rule out any other autoimmune disorders. Every single test came back supporting the conclusion that I had MS. The episode of trigeminal neuralgia turned out to be what my doctors now consider my first major MS relapse.
I Still Didn’t Want to Believe It, but I Knew It Was True
The neurologist then suggested that I see an MS specialist. Right then, I realized that maybe the internet hadn’t lied to me. Maybe I should have investigated those weird sensations three years ago when they first happened. This was one of those “I wish I knew then what I know now” moments, because maybe I could’ve slowed things down sooner. Maybe I would have accepted it sooner, but sometimes my stubbornness gets the best of me. Hearing the specialist say those words — “You have multiple sclerosis” — was tough. I knew she was right, but at the same time I still didn’t want to believe it. I questioned her hard. Seeing the MRIs was my reality check: The specialist showed me multiple lesions on my brain and one active lesion in my neck. She explained everything so clearly. I trusted her, because she put all the pieces of the puzzle together. I’m pretty sure my husband took it harder than I did, because he was crying as I sat there stunned but relieved. I walked out of the hospital feeling calmer than I had in months. I had an instant mindset of pure determination, and that mindset is still with me every day. I am determined to beat the odds. The diagnosis that I got on August 9, 2021, changed my life, but it will never change me, because at the end of the day, no matter what happens, I will not be defined by MS.
