Wellness·9 min read

Asking for a Friend: Living with Multiple Sclerosis — And Not Letting It Write My Story

Picture of Alex, a mom with MS
Design: theSkimm | Photo: Brittany Werges
May 21, 2024

On Alex’s 32nd birthday, she went numb on her left side. She saw a doctor but didn’t receive a diagnosis. After several days, she regained feeling, so she assumed she was fine. Three years later, she woke up numb from the waist down. 

After visiting the ER, a spinal surgeon, and a neurologist, she was diagnosed with multiple sclerosis (MS) — a chronic neurological disease with no cure and symptoms like fatigue, numbness, hand tremors, and difficulty walking, among others. We talked to Alex about living with MS, what it means for her as a mom, and how finding the right treatment for her has helped her continue to do what she loves.

Walk us through your initial reaction to your diagnosis.

My sister and I were sitting in the backyard of our family home where we grew up when I got the call. My dad had passed away six months before and it was right around the 11th anniversary of my mom’s passing. It just felt like that’s where I needed to be when I found out. I always had this feeling that MS might be a part of my story because my mom had it. [Editor’s note: MS isn't directly inherited, but people who are related to someone with the disease are more likely to develop it.] But even though I knew she lived with MS, I wasn’t super familiar with the physical, mental, or emotional impact it could have. Then you start Googling and you're like, “Oh my gosh, I'm not going to be able to walk. I'm not going to be able to have kids. How am I going to provide for my family?” I was basically thinking that the disease had taken all these things from me that it hadn't yet. 

What are your biggest challenges living with MS?

It's a mental game for me. I'm very hyper-aware of what's going on — almost to my detriment. Early in my diagnosis, there was a tremendous amount of fear. My husband would go out of town and I would worry that all of a sudden I would wake up paralyzed, and I wouldn’t be able to get to my daughter because she's in a crib. In those situations, I thought to myself, “What would I do?” In ways like that, and others, MS can be a pretty nasty disease. You may go through periods of easier times, but you don't know when the next event can happen [Editor’s note: an “event” refers to a relapse when a person living with MS experiences numbness, tingling, or other related symptoms].

How are you able to keep doing the things you love while living with MS?

My doctor plays a huge role in how I navigate living with MS. Thankfully, he’s great about listening to my concerns and sharing his recommendations based on how I’m feeling — and then he lets me make the final decision on how to move forward. 

Every time I talk to him, I feel better about myself and my diagnosis. Normally for me, doctors can be scary, but he and I have built a lot of trust over the years. With a disease where it feels like everything is out of your control, I really appreciate that his approach is so collaborative.

After my diagnosis, he walked me through a number of different treatment options based on my desire to have a low-frequency treatment plan. Ultimately, we chose Ocrevus® (ocrelizumab) because you only have to get it administered once every six months, so treatment didn’t have to become a constant reminder to me that I have MS. I have been responding well to treatment the past two years, and I can truthfully say that my day-to-day life hasn’t changed that much. 

[Editor’s note: 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 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.]

Can you tell us about your mom and her journey with MS?

I always knew she had MS, but honestly, until I had it, I didn't fully understand what it was. I knew it was scary and that was the extent of it. I never knew how it impacted her because she didn't allow MS to be her story. Her story was so much more than that. She was the CFO of an international corporation. She had three kids. She was the breadwinner of our family. She rode horses. She was a farmer. She was an amazing woman. 

What did you learn from your mom’s experience?

What's so important for me is to not let MS define me. My mom didn't let that be the case for her — she still went out and did everything that she wanted to do. Because of that, I try to live my life exactly as I would if I didn’t have MS. And if we [my family] have to take a pause because of my disease, we deal with it at that specific moment in time.

What helps you navigate life with MS?

Surrounding myself with really good people. I have a phenomenal husband who's here to support me, as well as my lovely daughter, Sloane, whose name means “warrior” and serves as a constant reminder for me to continue to show up as one each day. My mother-in-law is also always willing to help however is needed, and my two younger sisters live close, which has been a blessing. We are a very close-knit family, so having them nearby has been integral in the ups and downs of living with MS.

For anyone living with a chronic disease, it’s important to surround yourself with really empathetic, caring people. That way, if you do have a moment where you're struggling, which you inevitably will, they can help you navigate it. 

What advice would you give another mom who just got an MS diagnosis? 

It is not the diagnosis that it once was — there are treatment options, like Ocrevus®, that may help you keep doing the things you love, and it's important to find the right treatment plan for you. Most importantly, don’t let MS write your story before it’s written. You don't know what it's going to be like. Your journey is going to be different from everybody else’s, so just allow it to be yours. 

Psst...if you or a loved one has been diagnosed with MS, treatments such as Ocrevus® can help. Talk to your doctor and head here to learn more.

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:  Infections are a common side effect. OCREVUS increases your risk of getting upper respiratory tract infections, lower respiratory tract infections, skin infections, and herpes infections. Serious infections can happen with OCREVUS, which can be life-threatening or cause death.  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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