My Multiple Sclerosis Was Misdiagnosed At 20 – After My Doctor Completely Dismissed My First Symptoms
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.