I Was Diagnosed with Pediatric MS

Pediatric multiple sclerosis isn’t talked about often, but that doesn’t mean the community of those who lived through it is small. Likewise, many teens and parents of teens may be reading this now to seek answers about what is currently going on.

To open up a conversation about what your experiences with pediatric MS were and are like, we reached out on the MultipleSclerosis.net Facebook page. We asked: “Who here was diagnosed with MS as a child or teenager? Let’s talk about it.”

Almost 70 of you commented. Here’s what you shared.

Early signs and symptoms

By definition, pediatric MS is any case that presents or is diagnosed before the age of 16. One of the tougher parts of pediatric MS is that relapses happen at greater frequencies at younger ages. The good news, as a couple in the community mentioned, is that, in cases that are diagnosed and treated early on at these young ages, the cognitive impact can be decreased dramatically.

“The symptoms started appearing when I was 7, and then I had more severe symptoms in my teens.”

“I was diagnosed at 20, but I definitely had symptoms earlier. The good news is that those who get it younger tend to do better (less severe course).”

Bouts of optic neuritis

Having inflammation in your optic nerve, causing temporary vision loss, can be part of MS. Several of you mentioned that you experienced this symptom in your teens. For many, this is one of the first signs of MS—and definitely one to watch out for, especially if you’re experiencing several rounds of this.

“My daughter, by the age of 10, had 3 bouts of optic neuritis within 6 months. She is now 15 and luckily everything had stayed calm.”

“I was officially diagnosed at 24, but I had optic neuritis at 13. I had symptoms all through high school and college. Too bad pediatric MS wasn’t identified back then.”

“My son was diagnosed at age 12. He told me that he was seeing pink color in his right eye. Shortly thereafter, we found out he has MS.”

Problems with feet and legs

Motor disability can show up in young adults with MS. Several of you remembered how the disease affected your legs—most notably your ability to stand or run. Even though you didn’t have an official diagnosis, you knew that what was happening didn’t fit with what your peers experienced. Having the diagnosis helped you see with greater clarity what happened to you in the past.

“I was diagnosed at 30, but I vividly remember trying to run in middle school and my legs were numb. I couldn’t figure out why and was really scared. I tried so hard to run but couldn’t. I never told anyone.”

“My feet would shake when I was overly excited, and then the adrenaline rush would burn.”

Headaches and migraine

Headaches are very common in pediatric MS. However, for most, headaches were not the only symptom, but they might stand out as one of the more memorable ones. For those wondering if their child may have pediatric MS, migraines are a symptom to take special note of.

“I was diagnosed at 19, and now I am 68. I had headaches as a child, and now migraines as an adult. I have vertigo every day.”

We wish to say thank you to everyone who shared so candidly about their experiences. It’s our hope that more members of the community are able to relate and to find strength in the shared experiences.