What it's like to be diagnosed with multiple sclerosis at age 25
In February of 2015, after a busy weekend, I began feeling some tingling in the bottom of my feet. I thought that I was just sore from wearing heels, but within a few days, the numbness and tingling proceeded to go up my shins and into my knees and through my thighs. I’d compare the feeling to when your foot falls asleep.
Although the sensation was getting more and more intense over the course of two or three days, I wasn't super concerned. I thought that maybe my diet had played a role. I'm a very active person and I work in health and fitness PR, so I was just thinking, "Oh, maybe I'm not getting enough magnesium or something."
After about five days of this feeling traveling inch by inch up my legs, I went to see my primary-care physician thanks to the advice of my sister, who's a surgical nurse. My doctor quickly ordered an electromagnetic test (EMG) and an MRI to rule out meningitis, ALS, multiple sclerosis, and lymphoma. That's when I started to get a little nervous.
The next day I went and got those tests done. By then, the numbness and tingling had become so severe that I almost couldn't walk—I could feel the pressure of the ground beneath me, but I was forcing my leg to move. By day seven, it was almost a state of complete paralysis.
The EMG was the first test and it began with them sticking needles all over my legs and then sending electromagnetic shocks through those needles to see how my nerves reacted. I'll never forget it. The neurologist said I had severe swelling in my spinal cord, and ordered an immediate brain and spinal cord MRI.
When I was done with the MRI they said, "Go home, get some food because you've been in testing all day. Your doctor will likely call you and go over the results tomorrow or they'll bring you in. Just relax."
But within 10 minutes of me walking out of that place, my doctor called me and said, "I don't mean to scare you but you need to stop whatever you're doing right now and go into the ER. I just got your preliminary images and there's a major, major area of swelling in your spinal cord. You need to seek treatment right away." That was exceptionally terrifying. I thought that I was going to be able to relax and see what happens, but instead it was back to the ER, where they whisked me into a wheelchair right away.
That's when the series of diagnostic tests took place. I had two spinal taps, blood work, etc. I had four different neurologists come down to put me through strength tests, like the sharp-soft test, where they break a toothpick in half and they ask you if you can tell the sharp side from the soft side. At this point, they were trying to diagnose me through a process of elimination.
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At first, they said, "Oh, you definitely have to spend the night", then it was two nights, then three. Every day they would come back and say, "Oh, you don't have AIDS", and I'd think, "Great, this is wonderful. Wasn't hoping for AIDS."
But in all seriousness, AIDS is an autoimmune disease, which is what MS is, so it’s not too far off. They would say, "Oh, you don't have lupus. We can rule out Lyme disease." And so on, and so on…
In the meantime, my doctors were trying to reduce my spinal swelling. Every day I got a little bit more feeling back, but there was still a lot I couldn't feel.
Then after day four or five, doctors told me that I had transverse myelitis. A neurological disorder caused by inflammation of the spinal cord, transverse myelitis can be an initial indicator of multiple sclerosis, according to Kathleen Costello, vice president of healthcare access for the National MS Society.
There's no one test that can determine whether or not you have MS. It was the combined results from the MRI, the spinal tap, blood work, electrical tests, etc. (not to mention, my symptoms) that led my neurologists to that conclusion. By the time I got my diagnosis, I had already figured it would be something severe based on my symptoms. Despite that, I don't think any young woman is ready to hear that she has MS.
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I've been told the paralysis I experienced is one of the worst ways that MS can initially present itself. To put it in perspective, when some people are diagnosed with MS, their first symptoms are blurred vision or a lack of coordination or they have a little bit of numbness in their pinky finger, says Costello.
At the worst point, the paralysis had gone all the way up to the top of my ribcage, right below my bra line, and I felt a tightness, like someone was squeezing my ribs together, making it hard to breathe and hard to walk. That, I later found out, is called the ‘MS hug,’ which is a common first symptom. For me to go from a person who is boxing and doing Crossfit and yoga classes seven days a week to not knowing if I’d be able to walk again, was quite shocking.
Of those who suffer transverse myelitis, around 30 percent of them are never able to walk again, another 30 percent can walk with limited mobility and residual symptoms such as spastic gait and urinary urgency, and the last 30 percent get back, for the most part, full mobility. Thankfully, at the end of my recovery, I was in that last 30 percent, and now I'm walking and moving and working out and doing most of the things I used to be able to do.
However, I now live with permanent nerve damage—a common side-effect of MS. Any time it gets above 75 degrees or there's humidity in the air, I have tingling all up and down the back of my legs and my spinal cord. I have this thing called L’Hermitte. It's this weird, residual effect that happens when you put your chin to your chest, like if I'm looking down at my phone or if I'm tying my shoe. I get a weird electronic sensation from my nerves misfiring down my back. The way that I best can describe the sensation is that it feels like there's a vibrator on your back.
Today, I tire much more quickly and I can't do workouts that are as strenuous as what I used to do. Sometimes I can't wear heels for too long because I’ll begin feeling numbness and tingling. I’m still navigating the waters of my mobility, but I’m just thankful to not be confined to a wheelchair and have feeling in both my legs.
I had another attack recently, which was much less severe and less traumatizing. I lost feeling in my left arm, but this time I knew what it was and I got on steroid treatment right away. Now I have most of my feeling back with minimal permanent damage. Today, I manage my disease by adhering to a very strict, clean diet, going for MRIs every few months and blood tests every couple weeks, and taking medication and/or seeing my doctor when another attack comes on.
There’s a common misconception that MS is like ALS or that it's this degenerative, terminal thing, that I'm just going to keep getting worse and worse and there's nothing to stop it. It seems so much worse than it is. What I'm learning is that you can have an attack and then not have another attack for 30 years; that's very common. On the other hand, you can have five attacks in two years, which could be really bad and result in a lot of permanent nerve damage. There is a chance that I could be in a wheelchair five or 10 years from now, but that chance is very slim. My youth and the fact that I’ve led such a healthy lifestyle have both helped me recover from attacks quickly so far.
For me, the hardest part of all this is the unknown. There is no cure, so I'm waking up every morning wondering if I’m going to have another attack, or if today is going to be the day where five lesions pop up into my brain and I won’t walk again.
Eighty percent of people diagnosed with MS are Caucasian females in their childbearing years. Learning that statistic was shocking, but in a way, I was comforted by it—I feel less alone.
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The one thing I want everyone to know is that I can still live my life with this disease. A lot of people don’t realize that—even my own friends.
I've had friends talk badly about me, saying things like, “Well, if she’s so sick, how’s she drinking on Saturday at a rooftop brunch?” and wondering why I look perfectly normal.
It’s hard to be open with people because I can see how they might think I’m using my disease as an excuse when it’s convenient. But the reality is I have bad days and I have good days—sometimes I feel ready to take on the world and other days I can’t physically get out of bed.
I think that’s been one of the more difficult parts for me, dealing with other people’s perceptions and judgments. Whether they think I’m dying or being dramatic, it’s impossible for them to understand what I and other people with MS go through, which leads to misconceptions.
I don’t blame people for being confused, but at the same time, I'm not going to lie down and not do things. I'm still a 25-year-old living in New York City. I'm going to have fun. I still want to date and try to find a good guy—even though that situation now comes with a plethora of complications.
At the end of the day, I’m learning to appreciate every moment. Yes, it would be great to not have MS, but I’m very aware of how lucky I am that my case isn’t more severe. That’s been my greatest take away from this experience: Don’t take anything for granted.