MacKenzie is a Health Stories Project member from Kentucky who is most passionate about changing the way people see folks with multiple sclerosis, “They tend to focus on all the things we can’t do instead of all the things we can.” She recently responded to our Get to Know Me story request about getting diagnosed with multiple sclerosis at a young age. Please join us in thanking her for sharing her story!
“I started to notice a pins and needles sensation.”
This past August, I got up, got dressed, and went to school for the 3rd day of my sophomore year. About an hour or two into class I began to notice my left side was getting a pins and needles sensation and numbness. I gave it awhile thinking it was nothing, but it only continuously got worse. I was then taken to the ER, and after a few simple tests, they assured me it was just anxiety. However, they also gave me a referral for a neurologist.
The symptoms I had been having seemed much more alarming to the neurologist.
I was admitted to my local hospital for more testing including an MRI, lumbar puncture, and CT scan. After my MRI came back with multiple lesions on my brain, my team of doctors decided it would be best for me to be transferred to a more advanced hospital. Weeks later I was finally diagnosed with Multiple Sclerosis.
I was only 15 years old.
“We had no idea what was in store for us.”
This journey would be so much more difficult if I didn’t have the support that I do from my community, family, and friends. When I was first diagnosed, we had no idea what was in store for us.
When I was able to go back to school I was in a wheelchair, and my school was more than willing to make all the accommodations I needed. My community also helped me get a ramp for my home so that getting my chair up the steps wouldn’t be such a hassle. My friends and family went out of their way on my bad days to cheer me up (and they still do even if it’s the tiniest thing). Without this level of support, my fight wouldn’t be possible.
But even with support, living with MS has been a struggle. Diagnosis at such a young age has meant that I can’t be like most teens who are playing sports, hanging out with friends, or taking part in school clubs at my age. Sadly, I physically can’t do most of those activities. It is also frustrating never knowing what each day will bring. There aren’t many treatment options for people my age.
“You have MS, but MS doesn’t have you.”
People often comment on how young I am to be diagnosed with MS. The thing is MS doesn’t care who you are. It doesn’t care if you are young or old. Most people actually start experiencing symptoms in their teens or in their early 20s but aren’t diagnosed until later.
Through this experience, I’ve learned that there will be days that getting out of bed feels like it’s not even an option and days that feel like I can move mountains. On the bad days, I try to find the smallest beam of light and make it as bright as possible. At the end of the day, my mantra has become, “you have MS, but MS doesn’t have you. This is YOUR fight, and you can win.”
If you are reading this and have a loved one who suffers from MS or you know someone with MS in your community, I’d like to encourage you to learn more about this condition. Understanding MS will help you get a small insight into the horrible monster we are facing daily. Please know that your loved one may say, “I’m not sure if I can make it, I’ll see how I feel that day.” Or they might not call or text you back because they are having a bad day. I hope you take the time to understand their condition so that you hug them a little tighter, smile a little bigger, and laugh a little louder when you see them on their good days.