Read personal stories of diagnosis and treatment
Meet a group of individuals living with MS, who share their experiences to bring more awareness about MS. Discover their journeys from before diagnosis through their treatment experience with OCREVUS. Keep in mind that every person's experience with MS and with OCREVUS can be different.
Patient Spotlight: Julie's journey to OCREVUS
I met my husband, Steve, while we were working and going to school. After getting married, we moved for his medical school and my nursing school. We didn’t have a lot of money, but we enjoyed having one date during the week at our local burger joint and sharing a banana split at an ice cream shop. We went on to have three boys.
When I was first told I had MS, it came from my husband. He’s a radiologist, and when I had an MRI on my spine, he was the one reading the images. He told me they found 10 lesions on my brain. I asked if I would die, and he started sobbing and said I had MS.
The next week, I went back to my neurologist and we decided on a treatment. But my symptoms never really went away. My sister encouraged me to make an appointment with a neurologist who specialized in MS. At my first appointment, we talked about my treatment options, including a clinical trial for an investigational disease-modifying treatment. It was later approved as OCREVUS.
Thinking back on my life since my diagnosis, I have had many emotions—shock, worry, and most of all, fear. But I now realize that when your focus is only on your illness, symptoms, and possible future disabilities, you’re paralyzed! I found that drawing strength from my faith and loved ones has helped me through this disease.
I have a full-time career, but my job doesn’t define me. I have eclectic tastes and love to learn and travel. I took a knife skills class once, and fell in love with cooking. I’ve since taken several more cooking courses and expanded my repertoire. My husband and I love the outdoors and we take advantage of every second we can snowmobiling, riding ATVs, or walking. I am an avid reader and watch a lot of news. This is indeed a hodgepodge of loves, but, hey, that’s me; no definition fits me.
But one thing I have been known to do is bury my head in the sand and ignore clear signs. The road to my PPMS diagnosis was no exception. Over the course of three years odd symptoms would pop up here and there. Involuntary leg movements, stabbing pain inside my eye, burning nerve pain in my arm, numbness and tingling in my fingers, dizziness, difficulty concentrating, and balance issues all presented at some point, but they were never consistent, but once the symptoms got too severe to ignore, I finally saw a neurologist. Alas, I was diagnosed with PPMS, and at the time there were no approved therapies.
So, when OCREVUS became an option, I took the opportunity to speak to my doctor.
The most important thing in my life is my role as a husband and a father. I have a beautiful wife and two amazing children. I spend time at home with my kids, playing games and teaching them the life lessons I’ve learned. I sing with them, and we watch a lot of animated movies. I know every lyric to every kid’s movie that has come out in the last few years. Peculiar things happen to me all the time, but I have learned that what happens to you is not as important as how you react to it. That’s a lesson that has come to mean a lot to me ever since I was diagnosed with PPMS.
In high school, I was a varsity athlete. I lettered in both cross country and track & field as a distance runner. In fact, I was the number one runner on my cross country team. I stayed quite active over the next few years, until I began to notice I would fatigue much faster than I used to. I would sometimes trip from dragging the toes of my right foot. It felt almost like I had weights on my ankle. When I exerted myself, my right thigh would shake. Needless to say, I never even considered that I, the varsity athlete, could have a serious medical condition, so when I saw the high res images of the lesions of my brain, I couldn’t believe it.
My neurologist approached me about OCREVUS. As I find ways to live life in this ”new normal” with my family, I enjoy seeing my daughter dance or sing or maybe even play soccer one day. I'd love to see my son play football or baseball. Being a husband and father is what keeps me motivated.
I think I had a pretty normal childhood, and eventually grew up, got married, and had two children. They are my joy, my motivation, and my inspiration in life. Somewhere along the way, I also built a career as a brick and tile layer.
Then one day, I woke up for work as usual, but it seemed like I never opened my eyes. Everything was black and gray. I couldn’t see. So I went to see an eye doctor, and after only a few minutes, they sent me to the emergency room. Once all the needles had been poked in and all my prayers had been said, they told me they thought I had relapsing MS.
Over the years, I’ve gone through a few different neurologists and a few different treatments. But I continued to have relapses. I’ve been on crutches and walked with a cane. Then I saw a neurologist who specialized in MS. He thought I was a good candidate for OCREVUS, and together, we made the decision to try it. What I’ve learned is that you need to find what works for you. I decided to take some control over the situation and do what I needed to do to move forward, but it was hard.
I am a mom, a daughter, a sister, an auntie, an educator, and a friend. I’m a woman with goals and plans—but relapsing MS wasn’t part of them.
When MS entered my life, I was newly married, living in a new area with a new job at a new school. And there was something else new, too: A periodic tingling in my foot. One morning, I woke up seeing two of everything and wound up in the ER. They gave me a CAT scan and followed it with an MRI. The doctor said, “I think you have relapsing multiple sclerosis.”
I got on medicine to treat my disease, but it ended up not working well for me. It took more energy to accomplish the same amount of work. The girl who always had three million things going on couldn’t keep all the balls in the air.
My doctor found new lesions. I got a referral to an MS specialist, and we talked for hours about what treatment I would start next. We both wanted to make a choice that would fit into my life. That choice was OCREVUS.
From the girl who always had a plan to the woman who has had her plans interrupted, I’ve learned you have to take charge when something gets in the way. My plans have changed some, but I’m still trying to live life to the fullest.
Where I come from, they don’t call me Michael. They call me Big Un’ or Tiny. I’m known as the tough guy. I have been a team leader and senior master technician in car dealerships for more than 30 years, a volunteer fireman where I was awarded Fireman of the Year in my department in '97, a bar bouncer, a bodyguard for several top music artists, and a motorcycle rider. I have been referred to as one of the best vehicle technicians in the country and a motorcycle-riding fool. I command the room when I walk in. Don’t get me wrong. I’m not mean; just large and in charge.
When the doctor handed me a little piece of blue paper that read “Confirmed diagnosis of relapsing MS,” I felt like my friends and colleagues would look at me as a failure. In truth, I had no idea what relapsing MS was, and I didn't do any research because I didn't want to know what could happen to me.
After a few years of trying different treatments and several exacerbations, I knew I had to do something. So, I decided to give OCREVUS a try.
I have one of the best jobs in the world. As a mobility intake
specialist at a nonprofit organization, I get to help people live
fuller lives, which means I get to help people, like the elderly and
homebound get from point A to point B. There have been many times on
my journey with relapsing MS when I felt like I couldn’t get from
point A to point B myself, and times when I felt like giving up.
But, I am a passionate Latina mother, grandmother, sister, daughter, cousin, and friend. I’ve always loved going dancing but, above all, I love helping others. So, when I got diagnosed with relapsing MS, I was devastated. It broke my heart to think that I might not be able to do even the simplest things for others, especially my children.
After many years and a few treatments that didn’t work well for me, I decided to try OCREVUS.
I’m the type of guy who stays on top of things. I like to be in
control, so I am proactive about taking care of myself. I eat healthy
and I exercise. Having spent a lifelong career providing medical care
and equipping hospitals with the latest medical technology, I never
thought it would be me on the receiving end of a diagnosis. Don’t
think that the irony of having had access to the first MRI machine in
the U.S. at the time, in light of my relapsing MS diagnosis, escapes
I have been married for over 30 years to a wonderful woman who has always understood and supported me. Together, we are a wonderful team. We have three children, and a total of four grandchildren.
I’ve often called relapsing MS “a sneaky disease,” because its symptoms aren’t always visible and they can arise when you least expect them. It was in the spring of 2008 when my sneaky symptoms began to surface. Forgetfulness, confusion, misplacing things, fatigue, heat sensitivity, and loss of vision all began to stack up to what I thought might be a brain tumor, but the MRI I had confirmed my relapsing MS diagnosis.
After a few years and a few different treatments, I decided to try OCREVUS.
As a good friend of mine and mentor says, “Every day is a holiday, every meal a banquet,” and I plan to enjoy every bite.
Six years ago, I was an active single mother raising three wonderful children. I also had a challenging career in IT consulting. My weekdays were spent juggling clients, and my evenings were spent running kids to practice, helping with homework, and trying to remember to feed them.
One day, while working out, my arms and hands started going numb. One spinal tap, one MRI, and three doctor visits later, I was told by a neurologist that I had relapsing MS.
The months after my diagnosis were a very rough time for me. I
didn’t want to tell any of my coworkers for fear of what might happen.
I threw out all my high heels because I just knew I would never be
able to walk in them again. But what weighed on me more than anything
was the fear of what would happen with my kids. One of the things that
is so challenging about having relapsing MS is its unpredictable
nature. Every day is different, and you truly don’t know what the
future will hold.
After a few years and multiple treatments, my doctor approached me about OCREVUS. And I felt comfortable moving forward.
I’m a dog lover, a Mr. Fix-It, a Hollywood agent, a volunteer for kids, a professional food taster, a sailor, a baker, and a vacation property manager. I also live with relapsing MS.
In July 1994, while I was on a bike ride with a friend, I noticed a blind spot in my vision. I thought it would disappear in a few minutes, but it didn’t. I went to an ophthalmologist who thought I might have had a stroke. He ordered an MRI and a few days later I got a call. Ever so matter-of-factly, the ophthalmologist said: “You have MS.”
I’m a firm believer that knowledge is power, and I was determined to achieve as much power as I could over relapsing MS. So I kept up with developments in the treatment of this disease.
Through all this, my neurologist and I developed a great relationship. Together, we were always on the lookout for a treatment that would work well for me and my lifestyle. I enrolled in clinical trials and started new treatments as they came available, but there were setbacks along the way. Then she heard about OCREVUS. We agreed that, as soon as it was approved, I would go on it.
Today, accepting my relapsing MS diagnosis and doing everything I can is part of my journey. No matter what, I’m determined to keep living life on my own terms, taking on the challenges—and adventures—as they come.
Relapsing MS: Thinking about your treatment options?
Download an education kit that can help you talk to your doctor about OCREVUS for relapsing MS.
PPMS: Are you considering OCREVUS?
Download an education kit that can help you talk to your doctor about OCREVUS for PPMS.