A 24-year-old man who needed to go to the bathroom at least 20 times a day, thinking he had cancer, was instead diagnosed with multiple sclerosis – and he is now using his TikTok to educate more than 12,000 followers. Antonio Perez, 24, from Dearborn, Michigan, initially thought he had urine cancer when he desperately needed the toilet more than 20 times a day, but when he also exhibited extreme fatigue alongside other symptoms, doctors quickly sent him for an MRI in December 2021.
By January 2022, Antonio was diagnosed with multiple sclerosis, an auto immune condition that affects the brain and spinal cord, but despite his shock at being diagnosed with the lifelong condition, and the impact it has had on his ability to draw and dance, Antonio refused to be disheartened, bravely sharing his story on TikTok to raise awareness about MS. Accruing more than 12,000 followers, Antonio has now teamed up with BelongMS, an app that that supports MS patients, their families and caregivers, to become a mentor to not only help people but also educate caregivers on what it means to have MS.
“People think it’s contagious,” said Antonio, who lives with his partner Kris, 38. They tell me to get away from their kids because they think they can catch it. It is annoying, but the more awareness I can spread the better.”
A fit and healthy 22-year-old, Antonio was alarmed when he began needing to go to the toilet incredibly frequently. "At first my doctor thought I had urine cancer,” Antonio explained.
“I used to go to the bathroom about 25 times a day before I was diagnosed. I was just breaking down crying because I thought it was cancer. I didn’t realise at the time is was a symptom of MS.”
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But over the next seven months Antonio started showing further symptoms including difficulty walking, also known as drop foot, where he struggled to lift his left foot, alongside tremors in his right hand and fatigue – doctors quickly sent Antonio for an MRI and diagnosed him with primary progressive multiple sclerosis. The auto immune condition that affects the brain and spinal cord is caused by the immune system mistakenly attacking the layer that protects the nerves called the myelin sheath meaning messages travelling along the nerves become slowed or disrupted – it is two to three times more common in women.
“I got an MRI on my brain and spine and they saw all those lesions,” he said. “My type of MS affects about 10-12% of the world’s population diagnosed with MS.
“I was very depressed about the whole diagnosis. I couldn’t really do anything. Even after a month I thought no this can’t be happening to me.”
“I was a very healthy person and worked out every day. So I had to educate myself.”
As Antonio processed his diagnosis, he was prompted to share his own journey on TikTok. On the app, he shares his MS journey, filming his day-to-day activities including walking and working out.
“I was really nervous when I first posted my video about being diagnosed,” he said. I knew it was going to be long lasting.
"So I was going to talk about it and bring awareness to it, because I noticed the younger community wasn’t really talking about it. I thought people were going to look at me differently. But there was so much love and support from my followers, my family, my friends. It was really nice.”
Though Antonio was forced to give up some of the things he loved the most, such as dancing and drawing, he found solace in the community he had built even during his darkest days. “It comes in a waves,” explained Antonio.
“About a month ago I was really bad. I couldn’t even walk, I had to stay in bed, I would have to hold on to the walls or crawl. It’s helpful especially during the dark days. I posted a few sad moments on TikTok and people’s words have really helped with love and support.
“I can’t really dance anymore. I used to work out every day and I can’t work out as much anymore. I try to work out maybe three or four times a week. The most difficult would be my drawing and writing. I no longer can use my right hand, so it’s a little embarrassing when I have to ask others to write for me.”
“I miss drawing but I can’t do that anymore. I’ve tried but it just doesn’t come out like it used to. But I have found a new passion for cooking. I especially enjoy making stuffed peppers at the moment.”
Amounting over 12,000 followers on TikTok, Antonio is proud of sharing his journey and has been overwhelmed by his followers’ support. “I’ve helped a lot of people in the UK, Spain, Italy and Sweden. It’s crazy,” he said.
“I’m proudest of being able to share my journey. I’ve done a lot of work. I worked with Walmart, the National MS Society as well as BelongMS. This one girl from Switzerland got diagnosed about a year ago and she was praising me for all I had done.
“It has really helped my confidence. I want to raise awareness and help others.” Now Antonio is embarking on his next journey – becoming a mentor for support app Belong: MS.
The platform connects users with their peers to support one another along their MS journeys. “The app helped me a lot when I was first diagnosed,” he said.
“I was looking for a community of people to talk to. They’ve also helped me with nutrition because I didn’t know how to eat and they’ve helped me with workouts.
“I’m excited and nervous about becoming a mentor. I’ll have my own group, ask questions, answer questions, talk about my illness, what I have to go through. So that’s exciting, I start next week.”
“It’s open to everyone from people diagnosed with MS to caregivers that take care of people with MS.” He added: “I’m wearing orange every day as it’s MS awareness month in the America.
“I’m working on bringing more awareness, I hope in the future I can continue to work with big corporations to talk about MS.”
