Life Changed When I Was 12 Years Old

By emill91

1 min read

I was a 12-year-old getting ready for bed when I laid down, and suddenly, I felt different, just not right. I screamed and cried as I did not know what was going on. My younger brother, who I shared a room, was with distressed. As I lay there, I could not feel my left side. It was completely numb. There was no feeling, just nothing at all. That was my first experience with MS.

I just knew something wasn't right

It took me two years after that to be diagnosed. I was in year seven, during my first year of high school, when I went to the office with my friend because, again, something was not right. I couldn't feel my left side, and I had lost my balance. I went to hospital for a few weeks. No one knew what was wrong with me. Back then, I felt like something was really wrong with me, and I kept thinking that I was not normal and I would never be normal again.

I was worried about my family's reaction

I thought my family would treat me differently, but they did not. Sometimes I think they even forgot that I had this invisible disease. It affected me mentally and physically, and it still does to this day. I had to learn how to cope with this horrible disease, and I believe it is what makes me stronger every day. Some days are harder than others, but I think at least I’m alive and here for a purpose. You are not alone; we are MS warriors, and we understand each other better than anyone else. I share my story with you in hopes that you can relate and realize that there is nothing wrong with you. You do have a purpose and I am still figuring out what that purpose is. You are brave and strong and are not alone. If we can get through this, we can get through anything.

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Frogfoot Member
I can relate, thank you for sharing your story. It’s difficult with undiagnosed pediatric MS. As a kid, not knowing how to describe or articulate the sensory attacks, temporary paralysis, the foggy mind or the pain, you end up internalizing it all. Then believing it must be some kind of madness, don’t talk about it, no need to worry others if the difficulties aren’t too noticeable. Until after issues being dismissed or the many misdiagnosis over the years, was eventually diagnosed with MS 30 years after the first attack… some odd relief that it wasn’t madness. Now I’m a 58 year old man, diagnosed at 41, there’s been some wonderful & some difficult times but, we endure. That’s why I appreciate this website, we’re not alone there’s someone that can relate & how they manage. All ya can do is accept, adapt to what’s incurable, endure… find your joys no matter how simple they may be, find your joy. Be well & shine on
1. Latoya.Juniel Community Admin
 <inline-mention username="Frogfoot" user-id="3972853"/> Thank you so much for sharing your story. I can’t imagine how difficult it must have been as a young child, dealing with such intense symptoms without knowing how to express them. To go through sensory attacks, paralysis, and pain, all while thinking it might be madness—that must have been incredibly isolating. The relief of finally getting a diagnosis, even after so many years, must have been a mix of emotions, validating but also bittersweet. I really admire your perspective on accepting, adapting, and enduring—it’s a message that resonates deeply. You’re right, finding joy in the little things and connecting with others who understand can make all the difference. How have you managed to find those joys along your journey? -Latoya (Team Member)
Frogfoot Member
Wasn’t expecting a response to my comment, thanks Latoya. I find joys in my dogs wagging tail & smiling face, my buddy. Taking him for walks at 3am to gaze at the cosmos is a great comfort. Going to the wilderness when possible, just can’t do it in the desert heat of summer, high temps knock me down a few pegs. It’s the simple things, football season is always a welcomed distraction too. I appreciate your response. -Frogfoot, Daniel 
1. Latoya.Juniel Community Admin
 <inline-mention username="Frogfoot" user-id="3972853"/> (Daniel) That sounds absolutely amazing and peaceful! It sounds like you’ve found some beautiful ways to find joy and comfort, even in the middle of life’s challenges. I totally understand how the heat can slow you down, but it’s great that you’re able to embrace the peacefulness when you can. And as for football, I have to ask, whose your favorite team? I love college football and have grown up watching Alabama but for the NFL I love the Green Bay Packers. Football has been my favorite down time and I'm so glad football season is here! -Latoya (Team Member)
f5hwo4 Member
I was also ill when I was 12 to 16 years old and spent a lot of time in the hospital. The doctors could never figure out what was wrong. I was even in a hospital ward for dying children for a week. I had extremely high temperatures and passed out frequently, they had a cage over my bed because I was wild. I understand a little on how you feel about your lost childhood. By the way I like your Frogfoot name, my name would have to be big foot for obvious reasons. Potter
1. Doreen H Community Admin
 <inline-mention username="f5hwo4" user-id="3977349"/>, Potter-I'm saddened to hear you can relate all too well. I appreciate you taking the time to share your heartbreaking story. That had to be a truly difficult time for you. Sending hugs, Doreen (Team Member)
f5hwo4 Member
I survived but the worse part for me is that I missed a lot of school and I loved school. I was also put on a special diet, the food was tasteless. All of the kids would go out for hamburgers and I had my bag of twigs. I wasn't suppose to drink pop. I volunteered for every job that was available, I helped arrange more proms and dances than I ever attended. I consider myself lucky, we had seven people in our senior class die that year. I just had my 72th birthday and still kicking. Potter
1. Latoya.Juniel Community Admin
 <inline-mention username="f5hwo4" user-id="3977349"/> Wow, Potter. I can't even start to imagine going through such a tough time at a young age, especially missing out on things like school and socializing with friends. But your resilience really shines through, and it’s amazing how you found ways to stay involved, even if it wasn’t the same as everyone else. I’m so glad to hear you’re still kicking at 72—that’s inspiring! Your strength is a reminder that even through loss and hardship, we can still find ways to keep going. Thank you so much for sharing your story with us!