For the past year, I have been living with multiple sclerosis. More specifically, relapsing-remitting MS. And being correctly diagnosed took longer than what living with this thing that I can finally put a name to has actually been.
To make sense of that, I have to take you back to May of 2016. You know that tingling sensation you get when your foot falls asleep? I woke up each day with that feeling progressing from my toes, up my legs, and into my waist. My mom took me to the doctor and they drew blood, telling me if the sensation got worse, to go to the ER. And the next day, Mother’s Day, that’s what I did–I couldn’t hold myself up and could barely walk.
When I first saw these white matter lesions on this MRI in 2019, I didn’t know how to feel.
But after going through them a few times, it actually made me feel like I had closure. Physically seeing it gave me the push to fight.
After a four day stay in the hospital where they drew blood, spinal fluid, and took images of my brain, the on-call neurologist didn’t have a clear answer. He chalked it up to stress–I was a few weeks away from graduating college, my part-time job was ending, and it was a confusing time in my life. They prescribed me anxiety medication and said whatever inflammation this was (because from the spinal fluid they took, they saw my white blood cell count was high, meaning my body was trying to fight something off) would go away in weeks, months, maybe years. He was wrong.
I was always tired. Eventually I could walk normally again, but anytime I bent down or put my chin to my chest, I would have that weird, tingling sensation down my spine and legs. I would have these itching spells all over my body when I felt hot, which I later learned is called neuropathic itching, caused by the demyelintation of nerves due to MS; I have a photo of what that looks like and a short description of MS to the right–thanks MayoClinic!
I would get dizzy and trip over my own footing when there was nothing in my way. Eventually, in June of 2019, I woke up with everything looking fuzzy out of my right eye. I thought this was weird since I had lasik surgery back in 2017, so I chalked it up to how many hours I spent looking at the computer screen at work. A few days later, I lost all ability to see out of my right eye. I quickly made an appointment with my lasik surgeon, who after looking at everything, said my lens looked healthy and I should be seeing at 20/20 vision. He then asked me to put my chin to my chest and if I felt any sensation. I did, and explained that I had previously had this issue before. From there, he referred me to an optic neurologist–a guy who specialized in the brain/eye connection. I was uneasy, but I had been through all of this before. It couldn’t be MS. I was sure that the doctors from before would have told me.
After a series of images done on my brain AND spine, the neurologist sat my mom and I down and stated that the lesions found on both were consistent with multiple sclerosis. To his frustration, the lesions he saw on my spine were a few years old, meaning had the last neurologist done a scan of my spine, he would have caught the lesions there, and had me diagnosed and starting treatment sooner.
At that moment, my mom began tearing up. Understandably so. MS is a chronic, unpredictable disease; an autoimmune disorder where the immune system attacks itself. It is progressive and there isn’t a cure.
To break it down simply, “sclerosis” means scarring and “multiple” refers to the sites of the scarring on the brain and spinal cord. Due to this scarring, symptoms such as numbness, fatigue, memory problems, and loss of balance end up happening and are usually permanent. As I mentioned earlier, I have relapsing-remitting ms. While this means I have periods of stability in between relapses, these relapses are due to both new and worsening symptoms which can last for weeks or months at a time. And while right now it’s a relapsing form, eventually (a few years, decades if I’m lucky) it will transition to a progressive form where remission is less and less.
Am I scared? Every day. It’s always in the back of my mind: will tomorrow be the day I am resigned to a wheelchair? Will the blindness in my eye or both eyes come back? Will my remission times be shorter?
But am I also hopeful? Yes. Fifteen years ago, multiple sclerosis was essentially a slow death sentence. Now, there are fifteen different types of treatments to slow that progression. One that, so far within this year after two infusions, I’m grateful for. While I’m still coming to terms with what the new “normal” is for me, I can only hope going forward that those who decide to go on this journey with me can come to terms with it too.
So that’s my story. I’m going on chapter 27 in the book that is Vanessa. And although I wish I could take a peek at what’s ahead, I’m looking forward to what’s next. ✌🏻🧡