The other night my nine-year-old came out of his room hysterical and limping. I assumed he hurt himself practicing karate, a new dance move, or jumping off something. I tried to ask him what happened and he cried out, between sobs, that his foot was “bubbly.” Did he break something?? After a couple minutes I realized his foot was asleep and he was experiencing that tingling sensation as the feeling came back into his foot. To me, it feels like sand rushing through my body. To him, it felt like bubbles. It is uncomfortable when a body part falls asleep; no one likes it. But, for most of us, it’s something we’ve experienced hundreds, if not thousands of times. We don’t like it, but it doesn’t scare us. It’s familiar. We know what it is. And, we know it will pass. But to a nine-year-old who was not familiar with the sensation, it was terrifying.
My first obvious symptom of MS was in September of 2020 when I woke up with my vision severely impaired in my right eye. That was terrifying. It had never happened before and I had no idea what was going on, just like my son didn’t know why there were “bubbles” in his foot. Over the last couple years, I’ve experienced many new symptoms. In the beginning, I noticed every new ache and pain or weird feeling. I was alert and vigilant. I tracked the intensity and frequency of new symptoms. But after the tenth or twentieth or a hundredth time, those symptoms register differently. Just as I used to notice and ignore sore muscles after a workout, cramps during my period, or my foot falling asleep, I notice my MS symptoms, but they quickly fade to the background.
The most common type of MS is relapsing remitting MS. I think that is a bit of a misnomer. When I was new to MS, I thought this meant you’d have a symptom, then it would go away and you’d be fine for weeks, or months, or years, until you had another flare or relapse, which would last days or weeks or months, and then it would go away. That’s not really how it works. A “flare” is defined as a new or worsened symptom that lasts for at least 24 hours, and occurs at least 30 days after your last flare. To complicate things, there are also pseudo relapses, which are when symptoms worsen but there are no new lesions on the brain or spine. Instead, they are caused by other factors, including stress, heat, and illness. Pseudo relapses “usually” last less than 24 hours. However, MS doesn’t go away after a relapse. For most of us, the time between flares is far from normal. We have ongoing symptoms all the time. They may become routine and fade to the background, they may decrease in intensity and frequency, some may come and some may go, but there is almost always something going on. The consistency of symptoms is so frequent that the rare occasions where I am not able to detect any painful or odd sensations is noteworthy. In fact, I can only remember one day where I was in awe of my complete lack of symptoms.
My MS is rather mild. I am able to work, mother, and go about my business for the most part. My limitations are not observable to most. I type and scroll on my phone barely noticing that my fingers are numb. I walk and drive hardly registering numb toes. The muscle spasms in my legs, feet, and back can be annoying and sometimes uncomfortable, but generally don’t interfere in my day. The fatigue that can take me out is frustrating, but expected. When the numbness, tingling, and other sensations pop up in other places on my body for no discernible reason, I notice, but go about my day. But, sometimes, something new happens, or my symptoms intensify, and it can be almost as alarming as the “bubbles” were to my son.
Recently, my familiar symptoms all started popping up like jiffy pop over a campfire or a box of fireworks that had been sparked by a flame. The numbness was in multiple places all at once and more intense than normal. The muscle spasms were daily and jumping from place to place. Right shoulder, left back, left foot, left calf. Random pricks of pain. Burning sensations. Tingling like my son’s bubbles, but running up my shin and thighs. A migraine. While all this was happening, my thighs were suddenly black and blue. I looked like I was covered in bruises. It was sudden and frightening. Eventually, I realized my veins were dark and swollen. I’d never seen anything like it. Was this MS? Was it related to my other symptoms? Was it a relapse??
I still struggle to understand what is a flare and what is not. When I should contact the doctor and when I should wait it out. In the beginning, when they were still trying to confirm my diagnosis, I tried to report everything and often felt dismissed. I am more discerning in what I report now. I didn’t contact my neurologist right away. I waited. The symptoms continued for days and my anxiety increased, so I messaged my doctor’s office. They said the veins weren’t MS and asked some questions about my symptoms. Ultimately, my neurologist said the symptoms were likely exacerbated by stress and told me to follow up with another doctor about my legs. I was definitely under stress at the time, but not in a way that stood out or made sense. And my symptoms lasted over a week, much longer than 24 hours.
I made an appointment with another doctor about my legs. I had to wait several weeks to see her. My legs were black and blue for days and took a week to go back to normal. During that time, my mind came up with all the awful things that could be wrong. This was one of the rare times I was too scared to post or ask others if they’d experienced something similar. By the time I saw the doctor, my legs were back to normal. She said what happened to my legs was due to varicose veins and not related to MS. I was dubious because of the timing, I asked a lot of questions, and I did research and there does not appear to be any direct correlation.
Shortly after, I had my annual MRIs and there were no new lesions. So, not a relapse. Just the confusing roller-coaster ride of MS where symptoms come and go without explanation and you don’t know what is and what is not MS.