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  • Writer's pictureJenna Beall Mueller

Here's What It's Like to Have MS

Updated: Apr 24

This Saturday is Walk MS Cincinnati, and it's my first year participating.

Want to join my Sunny Steppers or donate? Click here, my friends!

Since multiple sclerosis is an invisible disease, I thought it might be helpful to pull the curtain back a bit and explain what it's like to live with MS. MS is often called the "snowflake disease" since every case is unique, so before I begin, just keep that little nugget in mind.

How is a person diagnosed?

An MRI scan confirms the diagnosis in over 90% of people with MS.

My MS was discovered in 2019. I'm a migraine sufferer, and after a particularly bad episode, my primary care doctor suggested an MRI. That's when they found my lesions. My doctor called me that same day, and I stupidly tried to end our conversation with, "But there are a lot worse things to show up on an MRI, am I right?" I then nervously laughed. He did not join in. (I am so awkward.)

I loved that primary care doctor—I would still go to him if he hadn't moved to a boutique practice. This MRI of mine came after nearly a year of bizarre symptoms, and I'm grateful he didn't give up on me. He kept pressing for answers.

What are the symptoms of MS? Fatigue, balance issues, cognitive difficulties (which are AWFUL but have the cutest little nickname of "cog fog"), bladder dysfunction, heat intolerance, weakness, dizziness, vision problems, and numbness or tingling are some of the big ones.

The National MS Society has a nice article on MS symptoms here.

Can you be pregnant and have kids if you're a gal with MS?

You bet you can! For many women with MS, you actually get to enjoy 9 months symptom free as your body focuses on growing a baby rather than attacking itself. Isn't that sweet?

Are there any celebrities who have MS?

This was actually one of the first questions that popped into my head after I was diagnosed. (Why am I this way?) Selma Blair, Jamie-Lynn Sigler, and Christina Applegate all have MS. I recently learned that Joan Didion also had MS.

What's the hardest part about having MS?

Again, everyone with MS is different, but for me? The fatigue is just brutal. I feel like I'm constantly in this frustrating spot of wanting to participate in an activity but not having the energy to do so. This is especially difficult as a parent. There are so many evenings I get home from work and simply want to crawl into bed. But I don't want to miss out on my daughter's life, so I do my best to press on. It's just plain tough.

Before I started Ocrevus, my neurologist prescribed me Adderall. My MS fatigue was so severe, I could take an Adderall and fall asleep 15 minutes later.

Another hard part about having MS is the financial cost of living with a chronic disease. For years, I received two MRIs annually. Each cost $1200 after insurance, so I could bet on spending $2400 out of pocket on those two scans alone. And that's only the tip of the iceberg, of course. My Ocrevus infusions are $250,000 before insurance. Is that bananas or what?

Is there a cure for MS?

Not yet, but medicine has made tremendous advancements in the treatment of the disease. I feel fortunate to have MS in 2024 compared to 1994, for example. There are an incredible amount of medications and therapies available to me that past MS sufferers didn't have access to. I am very lucky.

What's your advice for living with MS? The first thing that comes to mind is to find a stellar neurologist whose opinion you trust. My neurologist is an MVP in my life. (She's honestly one of my heroes, too!) I cannot imagine navigating this disease without her.

Beyond that, I actively work to avoid feeling sorry for myself. Because what good does that do? No one's life is perfect, not even Ina Garten's. (Well, maybe Ina Garten's.) And if having an invisible disease has taught me anything, it's that you really never know what's happening behind closed doors.

We are only given this one life, this one body, and I'm grateful for mine. Sure, my body is sort of quirky—just ask me about my uterus and subsequent problematic pregnancy sometime!—but it's mostly awesome. I'm amazed at all of the things it does well, and I try to focus on those instead.

Any other questions? I'm an open book (and an over-sharer, to be honest). Send me a message! I'm always happy to chat.

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