Tenley Diaz, 31, was diagnosed with multiple sclerosis (MS) in 2012 when she was 20 years old. MS is a neurodegenerative disease that causes the immune system to attack myelin, the protective coating that covers the nerve fibres. The ensuing inflammation and damage interrupt communication between your brain and the rest of your body, setting off a wide array of potential symptoms like muscle numbness and weakness, tremors and coordination problems, blurry vision, slurred speech, and heavy fatigue, among others.
It was a diagnosis Diaz didn’t see coming. Her first doctor dismissed her initial symptoms, and it took a few tries to find a specialist she trusted. But she found the care she needed—and trusted her intuition that something just wasn’t right. Here’s her story, as told to Korin Miller.
I was a uni student just shy of my 21st birthday when my left big toe went numb. I was enrolled in a really competitive course, so I ignored it for a few days. But then I started noticing another unusual symptom.
At first I thought I had a random patch of dry skin on my left thigh, until eventually I realised what was happening: I couldn't feel my hand touching my skin at all. This sparked a week-long adventure of me half-thinking I was losing my mind.
When I finally decided to see the uni doctor about the sudden numbness developing in my body, his response was that my jeans were too tight. I was advised to take some ibuprofen and wear joggers for a few days because he believed I had a pinched nerve – again, allegedly from my too-tight trousers. I did not receive this very well, as you can imagine. (My jeans were definitely not tight enough to pinch a nerve.)
The next day, things got worse. I went numb from the waist down and every step that I took caused a pins-and-needles sensation in my feet. I called my GP, who I'd seen for migraine headaches in the past – there was no way I was going back to the tight-trousers doctor – and got an appointment scheduled ASAP. He listened to my history and something seemed to click: “I think you have multiple sclerosis. I’m sending you for an MRI,” he said, and so I went in for imaging.
Sure enough, thinking back to my symptoms now, the skin I couldn’t feel on my thigh wasn’t dry or "dead” – my brain just wasn’t processing touch in that spot, because my test results were consistent with MS.
After my testing, finding the right specialist took some effort
I took a few days off from uni to process everything and to find a neurologist who could confirm the diagnosis and help guide my treatment. Luckily, most of my professors were very supportive and helped me rearrange testing and homework due dates to accommodate the few days I took off.
It wasn’t easy to find the right doctor. My first appointment was with the head of neurology at a hospital and his first words to me were, “So, you have MS.” He didn’t say, “Hi,” nor did he even introduce himself – he just dove right in, which felt pretty jarring. He also said this to me, a 21-year-old who had no idea what she was doing: “I’ll give you a list of medications. Just pick one to try.” I took the list and continued my search for an empathetic doctor.
I liked the next neurologist I made an appointment with, and I’ve continued seeing him for the past 10 years. He reviewed my entire history, exams, and scans with me before deciding to do a spinal tap. He confirmed that I did, in fact, have MS. Somehow, having that little bit of extra confirmation – and a supportive specialist in my corner – made it easier to accept the diagnosis as part of my life. My neurologist speaks to me like an intelligent person but doesn’t go over my head; he treats me as a partner in my care.
It took seeing an eye doctor to finally get the right diagnosis.
Over the years, one of the biggest lessons I’ve learned is to trust your instincts about your body
I’m now 31 and view MS as a bump in the road. My first flare got better before I started any medication, but the heat of the summer can definitely hit me hard and exacerbate my symptoms, as it can for some other people living with MS. Shortly after I was diagnosed, I got a handicapped parking pass to make getting to classes and my on-campus job easier. Because I largely felt okay physically, I felt like an utter fraud. I guess you could say that I had—and maybe still have—imposter syndrome around the disabling effects of my diagnosis.
My current treatment plan seems to be working well. Even so, fatigue is my biggest symptom after all these years. I’ll start a task that I would have done with minimal effort before my MS flared, and now it might take me all day to do it (and I’ll probably physically pay for it later). My muscles sometimes go weak and sitting down is an immediate requirement. I also struggle with brain fog; sometimes I just don’t have the words I need to communicate clearly. (That definitely makes the long hours at my current job as a veterinarian interesting.) I also can’t feel my feet as well as I used to. Past MS flares have led to numbness in my feet, flickering vision, and a bizarre symptom in which any kind of pressure on half of my back feels hot.
I know that my early MS symptoms were really vague, but they often are – so I want people to know that chances are, it isn’t just in your head. You know when something is wrong with your body. Listen to that instinct. If you’re experiencing changes you just can’t explain, keep pushing for answers until you get one that makes sense. If I had accepted that my jeans were just “too tight,” I wouldn’t have gotten the care I needed, and deserved.
This feature originally appeared on SELF.
