MS Symptoms People Rarely Talk About

Some aspects of multiple sclerosis (MS), such as muscle spasms and fatigue, are talked about often. However other symptoms are not commonly discussed.

To find out more about the people who experience those symptoms, we reached out to the MultipleSclerosis.net Facebook community. We asked, “What are the MS symptoms that no one ever talks about?”

The community was inspired by this topic – nearly 200 community members responded! Here are some of the lesser-known symptoms they shared.

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It’s Not All Glitter

Bubble baths, massages, shopping. These are just a few things that initially come to mind when I think of self-care. Self-care is often glamorized, focusing on the external material aspects that constitute treating oneself. Now, don’t get me wrong, I’m a huge fan of all of these aspects, and I love a good shopping spree every now and then. But these aspects are just on the surface of what it really means to care for yourself.

Self-care isn’t always as luxurious as it sounds or looks on movie screens. Taking care of oneself requires dedication and discipline. I’ve found that self-care is uncovering the ugliest parts of yourself. Really getting to the root of who you are as a person, how you react to specific situations, and how you grow as an individual are just a few life-changing processes that I truly consider caring for yourself. But where does this process even begin? Visualizing the person you want to be and showing up as them every day, regardless of your current circumstances, is just one method. Much like the classic saying, “Fake it till you make it,” you are only as good as your mindset. By acting as if you are already where you want to be in life, the rest will surely catch up in due time.

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Dear Caregiving Warrior

While we honor the important role of care partners throughout the year, November is an extraordinary month as we recognize National Family Caregiver’s Month. MS is unpredictable, and having a loved one diagnosed with it can be scary and overwhelming. MS symptoms may greatly vary from individual to individual. An individual with MS may need help with daily activities and these challenges might get more complex over time. Being a care partner requires a lot of patience, understanding, empathy, and flexibility. Here are some things to keep in mind as you provide care to an individual with MS:

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Ask the Expert – Pain

Featuring Barry A. Hendin, MD 

MSAA’s Chief Medical Officer  

Headshot of doctor Barry Hendin, chief medical officer for MSAA
Barry Hendin, MD

Question: What types of medications are prescribed for pain in MS and what types of   

complementary and alternative medicine (CAM) may be helpful?   

Answer: Management of pain includes but is not limited to prescription medications. Our initial goal is to assess the cause of the pain and then to try to manage the pain itself. Pain in multiple sclerosis (MS) can come from lesions in the central nervous system (CNS), which produce very specific symptoms of intermittent facial pain (called trigeminal neuralgia) or burning and itching discomfort in various parts of the body.   

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What MS Has Taught Me

By Suzanne Marriott

Being my husband’s caregiver throughout his years of living with MS taught me a great deal. I discovered hidden internal resources and developed new skills that stretched my understanding of what I could do.

Through embracing the challenges of caregiving, I learned to trust myself to do what had to be done to care for my husband, Michael, despite my self-doubt and lack of experience. For example, in the latter stages of Michael’s disease, I learned to accomplish procedures that only an RN could comfortably do, such as administering IV medications and changing his Foley catheters while maintaining a sterile environment. As his condition worsened, Michael came to trust me more and more, and I was able to ensure that he received the right medical care and the right follow-up—from me.

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What MS Has Taught Me

Working within the MS community has provided me with a profound perspective on life and resilience.  Each day, I witness the trials and triumphs of those living with this complex condition, and through their experiences, I have gained invaluable lessons that have reshaped my outlook on life.

The Power of Resilience: Witnessing the determination of individuals with MS has attested to the true power of resilience. Despite facing unpredictable symptoms and challenges, the strength shown by these individuals in their pursuit of a fulfilling life is nothing short of inspiring.

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Thriving with MS

Living with MS can be an ordeal of its own considering the unpredictability and uncertainty that comes with having it. MS can affect mobility, independence as well as quality of life. Symptoms may greatly vary from individual to individual. Over time, it might get harder to perform regular activities. By getting diagnosed during the earlier stages of the disease and with the appropriate treatments, an individual can live a healthy and fulfilling life.

For some individuals, the symptoms may be profound while for others it might be manifest as an invisible illness as result of which people close to you may fail to understand and acknowledge the seriousness of the situation. MS can make one feel isolated and alone. Individuals with MS want to be heard and would benefit from having a close-knit support system to vent out frustrations and anxieties whether it be friends or family.

For those who have MS, ask for help when you need it. Embrace your body’s limitations. Share your experiences and stories. Empower yourself and others by being an advocate for MS. Raise awareness of the disease and make use of the multitude of resources out there to improve the lives of those with MS. Set aside time to do things that you love and make the best out of your MS.

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Resilience Is Your Superpower

MS is debilitating and relentless, wreaking havoc on our bodies and minds. It is frequently a diagnosis that causes fear, confusion, and discomfort in so many ways. The first thing that I think of when I speak with a person with MS is the word resilience.

If there is one thing I have learned about people with MS, it is that they are resilient. They have learned to withstand difficulties and adapt to situations that many are unaware of. The courage those with MS show every day leaves me baffled. It takes strength to deal with the physical and “invisible” symptoms of MS, and educating ourselves and those around us about this disease is just as powerful. The MS journey is one of ups and downs, trial and error, and acceptance.

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My Unspoken Strength 

The lessons that living with MS has taught me are abundant. I have lived with this disease since I was in my very early 20s. Some of the most pivotal years of a young person’s life. I had big dreams of being a sports reporter. I did seven internships throughout my college career at Penn State University. The truth was, I was just downright hungry and would do whatever it took to be able to say, “I made it.”  

My last year of college was a pretty exciting time for me. I had just finished an internship with the B1G Ten Network. The show I helped produce won an Emmy Award, and I had just landed a new gig straight out of college for an ABC affiliate in Harrisburg, PA. I was about to take on the biggest news story living in the sports and news world at that moment. Penn State was amidst a horrible scandal that rocked the nation. I was assigned to cover the courtroom news for this story. I spent eight weeks living in a trailer parked in a Walmart parking lot close to the courthouse. I was doing live shots next to CNN, Fox, ABC, and ESPN. I was on top of the world, or so I thought… 

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 AnnaMarie Prono – October 2023 Artist of the Month

MSAA features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. We share these artists’ inspiring stories and beautiful artwork with you each month as our Artist of the Month. We celebrate AnnaMarie Prono as the October Artist of the Month this month. AnnaMarie is from Forest Hills, NY.

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