I Am a Millennial with Multiple Sclerosis

Stephanie Towler avatar

by Stephanie Towler |

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I remember the day like it was yesterday: Sept. 20, 2012. I was fortunate to receive a swift diagnosis — following a couple of tests, my neurologist told me that I have multiple sclerosis (MS). At the time I thought, “Well, let the journey begin.”

My name is Stephanie and I am 29 years old. I was 22 and a super senior at the University of Central Florida when I was diagnosed. College was already a challenge, and my diagnosis added to my mountain of stress. At the time, I wasn’t aware of the symptoms of MS. I had also been experiencing numbness for a few weeks. I thought my sleepiness was due to my schedule and horrible sleeping habits. Though I was dealing with severe fatigue due to MS, I continued to work hard as I was determined to finish school.

One day while at work, my face, feet, and the entire left side of my body went numb. I tried to ignore it. However, my co-worker was a retired nurse and noticed when I started rubbing my face. She asked me what was wrong and I explained my numbness. She called my manager who sent me home.

When I returned to campus, I immediately went to the doctor’s office. She was extremely concerned about my symptoms. Over a week I had follow-up appointments where she observed my behavior and researched various disorders. Finally, she referred me to a neurologist, and following two visits and two MRIs, I was diagnosed with MS.

The diagnosis hit me hard. I was struggling to finish my undergrad while living nine hours away from my parents. Thankfully, my mom could visit, but no one fully understood the battle I faced. Lack of sleep and fatigue was making it hard to focus in class. Some days I couldn’t feel my feet and I had frequent mood swings and bouts of depression.

My mom asked my neurologist about clinical trials. At the time, a new medication called Ocrevus (ocrelizumab) was being tested to treat specific types of MS. My neurologist said that I would be the perfect candidate for the study. The trial consisted of an infusion every six months and three shots per week. It was a blind study, so I didn’t know if the infusions or shots contained the medication or if I was getting a placebo. I quickly learned that the shots were a placebo and the infusions were the medication. I believe that my decision to participate in this trial was one of the best that I made in treating my MS.

Seven years later, I am still on a clinical trial for Ocrevus. I get the infusions twice a year and the procedure takes about six to eight hours. Since my diagnosis, I have had 27 MRIs, which is the worst part of my medical care. Battling narcolepsy, insomnia, and depression hasn’t been easy, but these disorders have been manageable.

The typical demographic for MS onset is 20 to 30 years older than me, and I have yet to meet anyone from my millennial generation with this disease. I am sharing my struggles in the hope that some readers can relate to my experience. I want my fellow millennials with MS to know that you are not alone in this battle. Keep fighting!

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Deborah avatar

Deborah

Stephanie, thank you for your article. Receiving a multiple sclerosis diagnosis is never easy but when you’re so young it is even more overwhelming. My son was diagnosed at 20. He is now 30. He just had his second round of Lemtrada. MS is a rollercoaster ride that that doesn’t stop. Enjoy the good days! Wishing you all the best!

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Brittany McSweeney avatar

Brittany McSweeney

Hello,

I am also 29 years old with MS. I was diagnosed at then of my senior year. I would love to talk with you more about your experiences.

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Dan MADDEN avatar

Dan MADDEN

"The typical demographic for MS onset is 20 to 30 years older than me..." I think the age group you are referring to is for Primary Progressive MS? Is this the one you have?
I am not in your age group, but I hope you find people your age you can relate to.

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Danielle avatar

Danielle

I thought that as well. It was always my understanding (and I think what I've read in several places) that the typical age of onset for MS is 20-40. PPMS is over 40, on average. I was 38 when I was finally diagnoses with PPMS.

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Betsy avatar

Betsy

Millennial with MS here, DC was about 3 months after you, give or take a month for tests. So glad you found what worked for you early! Stay strong.

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Teresa Wright-Johnson avatar

Teresa Wright-Johnson

Stephanie,
Thanks for this brave, honest and uplifting column. You are a courageous young woman and your voice will reach many. Follow your dreams because God has plans for you.

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Richard Edward Anderson avatar

Richard Edward Anderson

Keep fighting I too have neurological issues being evaluated. I changed my diet and looked into oxidative stress

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Nada Zdrale, MD avatar

Nada Zdrale, MD

Stephanie, you have a kick arse positive attitude that will give you the courage to climb the mountains/hurdles life may lay down in front of you. I was diagnosed at the age of 19 during the fall semester of my sophomore year at University of Pittsburgh. Don't ever give up and don't lose faith, YOU GOT THIS!!!:)

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Maria avatar

Maria

Hello, not too long ago I was hospitalized (literally last Thursday) because I woke up with the SAME numbness on the left side and facial droop. I was in the hospital for 4 days and at first doctors were calling it a TIA but nope after my MRI they found 3 lesions. I’m very new to all of this. I came across your blog and wanted to let you know that I’m 21 and in nursing school! School is already a stressor and having this to battle will be tough. But I’m ready for a challenge.

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Jen DiFilippo avatar

Jen DiFilippo

Your the first who was dxd in early 20's like me at 21. I’m SPMS now, I think it’s slowed a little. I am still slowly going down hill.

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Debbie avatar

Debbie

My 29 year old daughter was also just diagnosed. Her name is Stefani also.

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anonrymms avatar

anonrymms

Few years ahead of you in age and just wanted to message to say keep doing the right things!

I’ve mostly managed this and have had an amazing career in which I’m now an executive in a large company.

I’m still not out with my MS but if want to contact, hit me up on my email. Keep on meds, keep fit, keep healthy, and stay positive!

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Latoya avatar

Latoya

You are not alone. I understand the symptoms and consistently face challenges. I completed my Masters degree last year and my MS worsen. So much for me to excel in my career. How do you manage work life balance with a MS disease (fatigue, weakness, mobility issues, pain)?

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Aicha avatar

Aicha

Dear mellinial
God and the univers are with you. What you are descrbing was the itinirary of my son back in 2008. He lived the same experience finishing school @ UVA. I am glad you have your mom's support. It is valuably blessing. Meditation is helping my son on daily basis.
Mooji, cedric michel, Tolle, Shopra..... are some video you may want to try
Take care!

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Lexi avatar

Lexi

Stephanie,

My name is Lexi and I also am a millennial with MS. I was diagnosed when I was 25 but had apparently been experiencing the disease for 4 years prior to my diagnosis but the doctors hadn't put the dots together until I lost sight in my left eye and went numb on the right side of my body. I want to thank you for sharing your story. I as well have not met another millennial with this disease and it is nice to know I am not alone in this journey. Currently I am also on the Ocrevus medication and it seems to be working as I have had a few stable MRIs so I am hopeful but still waiting for the floor to crumble. Thank you for the encouraging words!

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Julie avatar

Julie

Hi, Stephanie! Thanks for taking the time to write, I'm looking forward to reading your column. I'm also a millennial diagnosed with MS (back in 2016). There are actually a lot of us, which was surprising to me until I quickly learned that a lot of people that are diagnosed are young women in their 20s-30s. That said, MS of course makes us feel isolated sometimes (this is not the special unicorn I wanted to be!) and it's frustrating to feel like no one can really understand what we might be dealing with. I've been fortunate to have met a few young women with MS that have been willing to lend an ear to support, and for that I'm so grateful.

Just know that I'm rooting for you and we're in this together!

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Katherine avatar

Katherine

Hey Stephanie! Wow your story sounds a lot like mines! I’m 22 right now and I was diagnosed oct 2018. My entire left side went numb I felt drunk.. my vision was off! Everything was just off ! It is what it is and we must keep fighting! God bless you all.

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Lo avatar

Lo

I was diagnosed at 21 right before my senior year of college, but I had symptoms for a few years before. I'm 34 now. College was definitely hard due to fatigue and other issues. I've had numbness and tingling in my legs, but it's not as bad as it was before my diagnosis. I've lost vision due to optic neuritis twice, and I take meds to sleep. You're not alone. Keep fighting!

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Can't Say avatar

Can't Say

I was diagnosed at 20 years old. Many of the things you have mentioned going through, I also experienced. I wish I could tell the other younger people who were diagnosed that it is ok, there is help out there. My experience tells me that there isn't. I have had MS for 17 years, I have had treatment for exactly one month. Apparently I was supposed to have made the money I needed for treatment by the time I was 20. The treatments that were available then cost a total of about 20 grand a year, now they have at least tippled in price.

Even though there is a lot of strength in having MS and completing college, don't tell potential employers you did something so amazing. I took that tactic. Almost a thousand interviews being honest, no job, first interview I lied about my MS in I landed a job (at a better company than any of the thousand I had previously applied to).

I want to tell you to have hope. However, my life has told me that there is no hope. My 20s were spent isolated, young people don't want to hang out with the sick and crippled. Access medicine now. However you can. 17 years with MS and no treatments that I could afford have left me in a state of secondary ms, at least as far as I can tell. My first two relapses were over a decade apart, my last two were a few months apart.

I have spent more time in the hospital than I wish to count. In America money is more valuable than human life, so I have suffered, watching my debt climb just from being sick before I could have a beer. There is too much here to discuss. There are more reasons to commit suicide than there is to live if you are sick in America and have no money. Republicans want to watch you die to protect their money, because if you need help, you are a thief. Democrats just watch it happen and call the Republicans mean, while doing nothing themselves.

America doesn't care. Good luck suffering for almost your entire adult life.

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Meghan avatar

Meghan

I got diagnosed not even a year ago and I just turned 20 in April.

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K P avatar

K P

Great article, and the comments are equally inspiring. Question--so how do you guys feel about disability? Is it worth being put into the system as "disabled?" or is it better for someone this young to work until they just cannot? In other words, pros vs. cons for a millennial....

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Daniel avatar

Daniel

Brave and honest, a powerful combination

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Renaud Clare avatar

Renaud Clare

I learnt about Herbal HealthPoint (ww w. herbalhealthpoint. c om) and their effective Multiple Sclerosis Formula treatment through an MS support group on facebook, I quickly started on the treatment. Few months on the treatment, my speech problems and tremors mysterious stopped, had improvement with balance and walking. This Multiple sclerosis  treatment relieved my symptoms significantly. Thank you for giving those of us with Multiple sclerosis a new hope. 

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Alexus Jones avatar

Alexus Jones

Hi! I don't have MS, but someone I worked with in high school got diagnosed with it. I also am one of the only young people I know that's tested positive for Huntington's. While that is a very different type of battle, I know what it can feel like to feel like people don't understand.

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