When I first learned I might have MS, I read about every symptom. I became hyper-aware of every sensation in my body. Yes, I had a neurologist and an MS specialist, who ordered MRIs, blood work, and a lumbar puncture, but I couldn’t sit idly by. While waiting for tests and follow-up appointments, I was on a mission to collect as much evidence as possible to determine whether or not I had MS. But, when you are fixated on something, it can be hard to determine if you’re noticing real symptoms, or if you’re imagining them.
Have you ever been around someone who has lice? Or knows someone how has lice? Or even texting with a friend in another state who is complaining about combing lice out of their kid’s hair? Or you read a blog talking about lice? And, you start to scratch your head? And, even though you know it’s your mind playing tricks on you, your head itches and you keep scratching it? Well, when you think you might have MS and you read about all the symptoms, you start to notice parts of your body are numb and tingling. But, you’re not sure if you’re imagining it. Or, maybe, you’ve had symptoms for years that you’ve ignored.
I’ve had headaches my whole life, as long as I can remember. I always have Ibuprofen handy. At my house, in my purse, my work bag, my desk drawer, my car. I assumed everyone had headaches all the time, that it was just a normal part of life. My mom had them; I had them. I was an adult before I realized there are people who don’t have headaches. Many of my headaches were actually migraines. I’d always thought that’s just what headaches felt like. I didn’t realize they were migraines until I had a debilitating one that kept me in bed for three days. When I could finally take the covers off my head and look at a computer screen, I researched what I felt and realized it was a migraine, and I’d been having them for years. Have I had MS symptoms for years that I’ve ignored and thought were “normal”?
Some symptoms are impossible to ignore, like when I woke up unable to see out of my right eye. Even now, when my vision gets blurry from heat or stress, it is unmistakable. But, so many symptoms are less clear. One of the most common symptoms of MS is fatigue. I am fatigued. I have never been so tired. During 2020, I stopped staying up watching TV every night, and started crashing when my son goes to bed. But, every single mom I know is exhausted. So, MS fatigue or 2020 fatigue?
Numbness and tingling are common too. I had a lot of numbness and tingling in the beginning, but I was also on really strong steroids. So, who knows? My left foot and toes feel numb on and off. I remember that my left toes would always go numb when I wore a particular pair of booties, and I always thought it was the shoes. But, now they go numb even in tennis shoes. MS? Or not? My hands and arms fall asleep and get tingly a lot more often than they used to, and more easily, but it’s usually when I’ve been laying on them and it comes and goes. Normal? Or not?
Muscle spasms are another MS symptom. I think everyone experiences muscle spasms sometimes. Right? But, mine seem to be more frequent. Some are painful and intense, others are dull aches. I have a lot of back pain, which I have realized is from muscle spasms. I’ve always had a lot of back pain. Were those back aches from MS muscle spasms? Or were they from stress stress and sitting at a desk too much? Caffeine and alcohol intolerance, forgetting a word, heightened emotions, headaches, restless legs, always being cold…MS or not? The list goes on and on.
While some symptoms are hard to decipher and may or may not be related to MS, other symptoms are clearly new. Like how heat and cold effect me.