I’m an active woman in my early 30s with a demanding job. I also have multiple sclerosis (MS), a chronic neurological disorder. But you probably wouldn’t know that by looking at me—which is exactly why I like talking about it.
MS causes progressive damage to the central nervous system and disrupts communication between the brain and the body. It can lead to a range of issues, including problems with coordination, weakness, fatigue, pain, and vision loss. People with severe symptoms may need assistive devices like a walker, or a wheelchair. For most of us though, some of the impairments caused by MS go unseen by others.
The truth is, MS has profoundly changed my life. Before my diagnosis in 2016 at age 24, my motto was work hard, play hard, and then work some more. I had just kicked off my nursing career and would often power through 12-to-14-hour shifts. In my free time, I did Olympic weightlifting and intense strength and conditioning workouts. To say that I was active would be an understatement.
My life with MS started when I began noticing persistent numbness in my left arm. I chalked it up to either injuring myself while working out, stress, or just having a lot going on. I had just graduated from nursing school. Within two weeks, I started experiencing the lack of sensation in my left leg. When I initially noticed it, I decided to take a moment because I don’t panic. When the sensation started traveling to other parts of my body, my nurse brain knew something was off. So I went to see my primary care doctor. She did x-rays and what she saw didn’t explain my symptoms.
The next month I started experiencing paralysis from my left knee down. I couldn’t feel my leg and I couldn’t walk. It would happen 20 to 30 times a day for about 20 seconds each. One day I finally looked at my mother and said, “I think there’s neurologically something going wrong, because this is not normal.” I just knew it in my gut something wasn’t right. My parents listened and took me to a neurologist.
What followed was a battery of tests: brain, spine, and thoracic lumbar MRIs, a lumbar puncture, and blood tests. Even though I knew my neurologist was looking for MS, when they broke the news, I felt I’d lost control of my life. I had always seen myself as a strong, capable person who didn’t need anyone else’s help. I didn’t want anyone else’s help. I didn’t want to slow down, either. My parents had raised me to take care of myself and not be a quitter. I was not willing to give up the life I led. But how could I continue like I always had when my body was fighting against me?
Over time, I learned that MS didn’t have to change who I was as a person. It didn’t have to stop me from doing what I loved and trying new things. I could still exercise. I could still continue my career. In fact, I made the decision to get my Master’s degree and become a nurse practitioner. But, in order to do all of this, I did need to make some significant shifts to my daily routine. I needed to learn how to lean on others for support. And, I needed to find the right treatment.
Prescription medications can often slow the disability that MS can cause. I tried three different medications that were not successful; I experienced symptom relapse that caused numbness on my entire left side and made it impossible to walk.
Thankfully, a course of steroid infusions allowed me to regain sensation on my left side and walk again. When I met with my neurologist to discuss which medication to try next, they suggested Ocrevus® (ocrelizumab).
Ocrevus was approved by the FDA in 2017 and is an antibody designed to selectively target a specific type of immune cell, known as B cells, which are thought to be a key contributor to the nerve cell damage that can cause physical disability and cognitive issues. Ocrevus is a prescription medicine used to treat adults with relapsing forms of MS, clinically isolated syndrome, relapsing-remitting MS, active secondary progressive MS, and primary progressive MS. More than 300,000 people globally have been treated with Ocrevus, which is administered through an IV infusion twice a year. The first dose of Ocrevus is split between two treatments, for a total of three treatments in the first year.
I can honestly say that starting Ocrevus was the best decision I’ve ever made for my life with MS. That’s not to say that I don’t feel the effects of my disease. Personally, I still experience fatigue, with some mild numbness or tingling when I push myself too hard.
While some of my daily activities look different now, I refuse to sit on the sidelines. I work out most days in the home gym that my husband built for us, always taking cues from my body on when to stop and rest. I’ve started coaching volleyball, which I used to play in college, for my stepdaughter’s team. We were able to find an indoor court, which is more manageable for me since the outdoor heat can worsen my MS symptoms. (I live in Phoenix, and that sun is serious.)
I’ve also learned to honor my limits. I go to bed by 8:30 P.M. so I’ll have enough energy to make it through the next day. I use a walking stick for balance when I go hiking. I use a cart to lean on when making my rounds to visit my amazing patients at work.
And, I’ve gotten better at asking for help. I let my family know when I need something, even if it’s just asking my husband to unload the dishwasher because I’m too tired. This allows me to have enough energy for them when they need me.
I’ve long struggled with anxiety and a need to call the shots—and there have been countless times when my MS has heightened those feelings. But getting into a routine and setting my expectations has helped me get a better handle on my life. Feeling like I’m the author of my life story, not my MS, has improved my overall wellbeing and mental health.
A person who passes me on the street or a patient I work with won’t know any of this by looking at me. But when I share my story, they start to get it: MS struggles are real, even when you can’t see them. No matter the challenge, though, I’ll never let my disease win.
For more information about Ocrevus as an MS treatment option, please visit www.Ocrevus.com.
Indications & Important Safety Information
What is OCREVUS?
OCREVUS is a prescription medicine used to treat:
- Relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, in adults
- Primary progressive MS, in adults.
It is not known if OCREVUS is safe and effective in children.
Who should not receive OCREVUS?
Do not receive OCREVUS if you have an active hepatitis B virus (HBV) infection.
Do not receive OCREVUS if you have had a life-threatening allergic reaction to OCREVUS. Tell your healthcare provider if you have had an allergic reaction to OCREVUS or any of its ingredients in the past.
What is the most important information I should know about OCREVUS?
OCREVUS can cause serious side effects, including:
- Infusion reactions: Infusion reactions are a common side effect of OCREVUS, which can be serious and may require you to be hospitalized. You will be monitored during your infusion and for at least 1 hour after each infusion of OCREVUS for signs and symptoms of an infusion reaction.
- Infection: OCREVUS increases your risk of getting upper respiratory tract infections, lower respiratory tract infections, skin infections, and herpes infections. Infections are a common side effect, which can be serious. Tell your healthcare provider right away if you have an infection. Your healthcare provider should delay your treatment with OCREVUS until your infection is gone.
- Progressive Multifocal Leukoencephalopathy (PML): PML is a rare brain infection that usually leads to death or severe disability, and has been reported with OCREVUS. Symptoms of PML get worse over days to weeks.
- Decreased immunoglobulins: OCREVUS may cause a decrease in some types of immunoglobulins. Your healthcare provider will do blood tests to check your blood immunoglobulin levels.
What are the possible side effects of OCREVUS?
OCREVUS may cause serious side effects, including:
- Risk of cancers (malignancies) including breast cancer. Follow your healthcare provider's instructions about standard screening guidelines for breast cancer.
Inflammation of the colon, or colitis: Tell your healthcare provider if you have any signs of colitis such as diarrhea, blood in stool, and stomach pain.
These are not all the possible side effects of OCREVUS.
Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Genentech at (888) 835-2555.
For more information, go to www.OCREVUS.com or call 1-844-627-3887.
For additional safety information, please see the full Prescribing Information and Medication Guide.
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