There are more than 80 symptoms that can be linked to Multiple Sclerosis, and its silent, insidious nature means it often remains undiagnosed for years—sometimes decades. In my own journey, I suspect I carried MS for at least ten years, perhaps as long as thirty-five, before the pieces of the puzzle finally fit together.
The body becomes a landscape where the seasons shift unexpectedly—extreme temperatures, an infection, a simple cold or flu, can cause the familiar, unwelcome return of heightened symptoms. These ebbs and flows, this delicate dance between ease and difficulty, often lead to a diagnosis of an MS flare—when the body’s own defense system turns against the delicate fibers of the nervous system, causing the storm to intensify. The treatment for such a flare is typically a fierce and brief intervention, like IV steroids, to quiet the storm and slow its devastating progress. In the past year, I’ve had to receive this treatment three times, each experience reminding me of my fragility and resilience.
Below, I share some of the symptoms that have woven themselves into my daily life, and each one of these threads tells a part of my story with MS—an ever-evolving, ever-challenging tale.
DYSGRAPHIA
Dysgraphia is a condition that affects one’s ability to write coherently, whether it be through poor handwriting, difficulty with spelling, or trouble organizing thoughts on paper. Dysgraphia, a word that carries the weight of so many unspoken struggles, refers to a profound difficulty with writing. It has become one of my most constant companions, lingering quietly in the background of my daily life. Once, I took pride in my handwriting—smooth, deliberate strokes that formed words as if they had a life of their own. But now, more often than not, the words I write are a blur, a puzzle that I cannot solve. I’ll take notes, only to look back and find them indecipherable, a tangle of letters that no longer speak to me.
But in this, too, I have learned to adapt. I am grateful for my laptop, where my fingers can still dance across the keys with relative ease, a small comfort in a world where so many things seem to slip from my grasp.
MUSCLE SPASMS
Muscle spasms, those unwelcome visitors, can range from a mild discomfort to a pain so sharp it feels almost unbearable. If you’ve ever experienced a charlie horse, you already know the kind of agony I’m speaking of—sudden, intense, and all-consuming. For me, these spasms often visit my feet, where the muscles tighten so fiercely that my toes seem to reach for the heavens, frozen in a painful, unyielding grip. It is as though my own body betrays me, twisting and contorting in ways I can no longer control.
Lately, though, it is the large muscle in my back that seems to have joined the chorus of discomfort. I can feel it knotting, tightening, until it pulls me taut, an ache that lingers long after the spasm has passed. These moments serve as a reminder of how delicate the balance between ease and strain can be, and how much of our strength lies in simply enduring, breath by breath, moment by moment
URINARY INCONTINENCE, FREQUENCY OR RETENTION
Bladder dysfunction is a common yet often silent struggle for many with MS, affecting at least 80 percent of those living with this condition. It arises from disruptions in the nerve signals that govern the bladder and its sphincters, those invisible forces that are meant to keep us in balance. For me, it manifests in an overactive bladder, one that refuses to hold a normal amount of urine, or at times, one that is unable to empty fully. It’s a delicate dance of my body failing to listen to its own rhythms, a reminder of how easily things can go awry when the connection between mind and body is interrupted.
To help manage this unpredictable companion, I rely on a prescription—a small, though significant, tool that offers some control. And yet, there are times when the balance is harder to find, and for many with MS, it’s not uncommon to turn to self-catheterization to help empty the bladder when it refuses to do so on its own. It is a humbling experience, one that serves as a reminder that living with MS requires a constant negotiation with the body—a conversation of sorts, though one that feels far too often out of our hands.
DIFFICULTIES WITH COORDINATION AND BALANCE
For many of us living with MS, there’s an unspoken fear—a fear that one day, we’ll be asked to walk a straight line to prove we’re not under the influence, when in reality, it’s our body, not our choices, that betray us. The simple act of walking a straight line—placing one foot precisely in front of the other—becomes a challenge, not because we’re driving recklessly, but because our coordination and balance have become unreliable. I used to glide effortlessly through the world as a dancer, my movements fluid and sure. But now, I can no longer walk that line, as though my body has forgotten the steps it once knew so well.
Before my diagnosis, I began to notice small signs of this shift. In crowded spaces, I started cutting people off without meaning to, zigzagging through life as if my body no longer followed the clear path I intended. I’d zip and zag, weaving my way through others, a silent dance of missteps I couldn’t control.
And then there were the falls. A few years before I was diagnosed, I fell three times in one day, seven times in one week. I didn’t understand it then, but I was in the midst of an MS flare, a time when my body seemed to betray me at every turn. To make matters worse, I was also dealing with herniated discs in my lower back and neck—complicating an already delicate balance. The pain and the falls were a warning sign, a whisper that something was wrong, but I couldn’t yet hear the full story.
COGNITIVE IMPAIRMENT
Cognitive impairment is a quiet, often unsettling companion for 40-65% of those living with MS. It typically touches the areas of attention, concentration, processing speed, and memory. For many, it’s like trying to grasp a thought that slips through your fingers, or chasing after a memory that hides just out of reach. Thankfully, for me, the impact has been manageable, though not without its unsettling moments. There was the day I forgot my husband’s name, a fleeting lapse that made me pause in disbelief. And then there was the day I had to look at my business card to remember the name of the company I had worked for—a simple task that became a struggle.
Fatigue certainly plays its part in these moments, but I know MS is the primary culprit. It’s the way the brain becomes cloudy, the way thoughts don’t flow as easily, as though the road between thought and action has become muddied. This symptom, more than any other, is the one that I fear the most. The fear of losing myself, of not being able to access the memories and moments that shape who I am, feels like a shadow that hovers, always present, reminding me of the fragility of what is mine
TINGLING, PINS AND NEEDLES OR NUMBNESS
Tingling is a constant, unwelcome companion in my right hand, a sensation that never quite goes away, always buzzing just beneath the surface. It’s a reminder that the body, once so familiar, is changing in ways that I can’t always control. But it’s not just my hand that feels this way—other parts of my body often feel like they’re “asleep,” as if the nerves have gone quiet, leaving only a dull, tingling numbness behind.
The strangest, and perhaps the most awkward, sensation of all is when my butt goes to sleep. It’s one of those things you never imagine experiencing—until you do. And then it’s just plain uncomfortable, a weird, yucky feeling that makes you wish you could shake it off, but you can’t. It’s a reminder that MS doesn’t just affect the obvious parts of the body—it sneaks into the places you least expect, making even the simplest moments feel oddly out of place.
MS HUG (DYSESTHESIA)
The MS hug was one of the first symptoms I experienced, and it’s one of the reasons we now believe I’ve had MS for much longer than initially thought—probably close to 40 years. I felt it for the first time in high school, and now, at 60, I realize how long this silent companion has been with me. It’s a sensation that’s difficult to describe, but once you’ve felt it, you’ll never forget. Imagine a blood pressure cuff tightening relentlessly around your waist, the pressure so strong it feels as though your ribs are being squeezed in a vice. For me, the discomfort wasn’t just physical—it felt as though my chest was being constricted, making it hard to breathe, hard to move, almost as though my body was being held in place against its will.
The MS hug was often a mystery for years, something I couldn’t explain, and I lived with it, unaware that it was part of a larger picture. Thankfully, I don’t experience this symptom as often as I once did, but when it does return, it still takes me by surprise. A reminder, perhaps, that MS doesn’t always show itself in ways we expect, and that some of its effects have been quietly threading through my life for much longer than I ever knew.
OPTIC NEURITIS
Optic neuritis is one of the more unsettling side effects of MS, one that directly affects the gift of sight. It happens when MS attacks the optic nerve, causing it to become inflamed. The result can be sudden pain, blurry vision, or even temporary vision loss. I first encountered this reality about four years before my MS diagnosis, when I found myself in the ER, panicked and confused, after temporarily losing vision in one eye. It was terrifying, an experience that made everything feel uncertain, as though the world I once knew was fading into shadow.
Since then, optic neuritis has become one of the more common symptoms I experience during an MS flare. It’s the one that scares me the most, perhaps because it threatens something so fundamental, something that connects me to everything around me. When my vision becomes impaired, it’s a stark reminder of just how fragile our bodies can be—and how quickly things can shift. The fear of losing sight, even for a moment, is a reminder of the unpredictability of MS, and the strength it takes to face each day, even when the world seems a little less clear.
DYSARTHRIA
Dysarthria is a speech disorder caused by damage to the muscles responsible for producing speech. With MS, the demyelination of nerves can result in the weakening, paralysis, or spasticity of these muscles, including the vocal cords. This disruption leads to slow, slurred speech and difficulty coordinating the movement of the lips, tongue, diaphragm, and vocal cords. For me, it’s a symptom that often surfaces when I’m tired—when my body is already worn out, and my words become harder to form, slipping from my mouth in a way I can’t control.
It’s a frustrating experience, especially when I know what I want to say but can’t quite get the words out clearly. It feels as if the connection between thought and speech is frayed, as though my words are tangled in a web of miscommunication. Dysarthria has become one of those quiet, daily challenges, a reminder that even the simplest tasks—like speaking—can require more energy than I have to give. But I’ve learned to listen to my body, to slow down, and give myself grace when the words don’t come as easily.
DIZZINESS
Dizziness is a common, disorienting symptom of Multiple Sclerosis, and it often creeps up at the most inconvenient times. For those of us with MS, it can manifest as a lightheaded feeling, a sense of imbalance, or even the unsettling experience of vertigo—where it feels as though either you or the world around you is spinning. This happens because MS damages the neural pathways responsible for coordinating visual and spatial information, which the brain uses to keep us steady. The result is a kind of disconnection, as though your senses are no longer in sync with your body’s movements.
For me, dizziness tends to strike when I turn my head, setting off a cascade of nausea. It’s a feeling that’s hard to explain to others, yet all too familiar. For years, long before my MS diagnosis, I would tell doctors that motion sickness medications helped to ease the nausea I felt. Time and again, I was told that couldn’t be possible. But now, with the pieces falling into place, it all makes sense. My body, reacting in ways that didn’t quite fit the usual patterns, was speaking its own language—a language that took years to understand.
WEAKNESS
When MS damages nerve fibers, the brain struggles to send effective signals to the muscles, which means they can’t flex or contract as they should. Over time, this leads to weakness, as muscles lose their strength from lack of use. It’s a gradual, frustrating process that leaves you feeling disconnected from your own body. For many of us with MS, pain often prevents us from being as active as we once were, which only exacerbates the weakness.
For me, it’s most noticeable in my hands. The once-familiar dexterity and strength that allowed me to easily grip and perform tasks has slipped away, leaving me unable to do things I once took for granted. Don’t expect me to open those stubborn jars—it’s likely not going to happen. What was once second nature now requires extra effort, and sometimes, even that isn’t enough. MS has a way of reminding me that strength can be fleeting, but it also teaches me to find new ways of getting by, even when my body doesn’t respond the way I hope.
SPASTICITY
Spasticity is a quiet, persistent companion, different from the sudden jolt of muscle spasms that arrive like a storm. While muscle spasms grip with sharp, excruciating intensity—like a charlie horse that pulls you into a moment of agony—spasticity lingers beneath the surface, a constant tightness in the muscles that refuses to release. It’s the feeling of stiffness, as though the muscles have forgotten how to relax, holding on even when they’re no longer needed. There is no sudden pain, but a slow, aching resistance that makes movement feel labored, as though my own body is rebelling against the flow of time.
This tightness can be felt in my legs, my arms, even in my back, and it’s never quite at ease. It can make the simplest tasks—standing, walking, or even reaching for something—seem like a battle against my own limbs. Unlike muscle spasms, which come in quick, intense bursts, spasticity is a quiet force, a constant undercurrent that can drain the fluidity from everyday life. It’s a reminder that sometimes, the hardest battles are not the ones we fight in an instant, but the ones we endure over time.
Click here to learn more about some tips on how to deal with spasticity and what I do when faced with a spasticity attack.
UHTHOFF’S PHENOMENON & HEAT INTOLERANCE
Multiple Sclerosis doesn’t just affect the body’s muscles or nerves—it also interferes with how the body responds to heat. MS damages the protective sheath around nerve cells in the brain and spinal cord, which slows down the nerve signals that regulate temperature. When these signals are disrupted, the body doesn’t respond to heat in the way it should. And, in turn, heat itself can make these signals slow down even more.
For me, this sensitivity became alarmingly clear just months before my MS diagnosis. I remember being at a football game on an uncomfortably hot day, when I nearly lost consciousness due to the heat. The event staff found me on the ground, having passed out from the overwhelming heat, and I was quickly taken to first aid. I had no idea at the time that this would be a precursor to a much deeper understanding of how MS affects my body.
Now, I’m extremely sensitive to heat and can slip into heat exhaustion with alarming ease. It’s a constant reminder of how MS changes the way your body responds to the world around you, and it has taught me to be hyper-aware of my surroundings. I carry water with me, seek shade, and avoid intense heat whenever possible—but the reality is that the heat can sneak up on me faster than I’d like.
NUMBNESS
Numbness, especially in the face, body, arms, and legs, is one of the most common and often one of the first symptoms of Multiple Sclerosis. For many of us, it’s a stark, unnerving reminder that something inside the body is shifting. This numbness isn’t the tingling sensation of pins and needles, but rather a loss or alteration of feeling—a sense of detachment, where a part of the body seems to fade into a quiet void.
It’s like the body has fallen asleep, but without the familiar prickling sensation of waking up. Instead, there’s just a dull, muted absence of sensation. I often feel it in my limbs, my arms, or even in my face—parts of me that I rely on for connection and interaction with the world. The numbness can feel like a barrier between me and everything I touch or experience, a quiet disconnection that comes and goes without warning, leaving me to wonder if it will stay longer or slip away like it usually does. It’s one of those symptoms that reminds me, in a deeply personal way, of the invisible threads MS has woven into my life.
EXTREME FATIGUE
There’s a kind of fatigue that’s hard for those who don’t have MS or many other chronic illnesses to understand. You might hear someone say, “I get really tired too,” but the fatigue we’re talking about here isn’t just a long day or the need for a good night’s sleep. It’s not the kind of tiredness you can shake off with a nap or a cup of coffee. No, it’s something far more overwhelming—a feeling so profound that it’s as if your body is demanding to shut down, completely and utterly, for an indefinite stretch of time.
I don’t experience this extreme fatigue often, but when it strikes, there’s no denying it. All I can think about is, “I need to sleep right now,” and it doesn’t matter where I am or what I’m doing. One day, I was up in the mountains, surrounded by nothing but trees and dirt, when it hit me with such force. I laid down right there, in the middle of nowhere, just to sleep. It was both a relief and a bit scary—there I was, in a place where no one knew where I was, but I couldn’t take another step until I rested. I remember thinking, “I may never wake up,” but all I could do was sleep. It was my body’s way of saying, “No more.”
When this happens, I’ve learned to take care of myself as best I can. I keep a yoga mat in my office now, so I can lie down and take a quick nap when the exhaustion becomes unbearable. There have been times when I’ve been so fatigued I couldn’t make it home. Despite my office being 50 minutes away from home, I’ve checked into a hotel nearby or pulled over to sleep in my car. Safety first. This isn’t like narcolepsy, where you can fall asleep without warning. No, this is a deep, overwhelming need to rest before I can function again.
Luckily, I’ve found some relief. I now have a medication, often prescribed for narcolepsy, that helps when these extreme fatigue episodes strike. It doesn’t take it all away, but it gives me the grace to rest and regain some energy when my body demands it. It’s one of those things people without MS just can’t fully comprehend, but it’s a constant reminder of how MS reshapes not just your body but your life.
DYSESTHESIA (ELECTRICAL SENSATIONS)
Dysesthesia is a symptom of MS that brings with it an abnormal physical touch sensation without any outside cause. It’s like the body’s nerves are sending the wrong messages to the brain, creating strange, often distressing sensations that have no visible trigger. For some, it manifests as throbbing, aching, stinging, burning, or even electric shock-like pains. Others may feel like their muscles are being torn apart or experience an “icky” crawling sensation beneath their skin, as if something is there when there isn’t. It’s the body’s way of creating sensations that feel real, even though they’re not based on anything external.
For me, the most common feeling is electrical shocks. It’s like accidentally bumping into a low-voltage electric fence—sharp and sudden, leaving a lingering pulse of discomfort. Sometimes, these shocks begin in one spot and travel to another, like a current moving through me, leaving a sensation that’s both painful and disorienting.
One of the more unsettling experiences for me is the feeling of something crawling on my skin—usually, it feels like a spider slowly making its way across me, though there is no spider in sight. This bizarre sensation can happen anywhere on my body, and it’s particularly disconcerting because it feels so real, yet I know it’s all in my nervous system misfiring. It’s a reminder that dysesthesia can be as much about the brain’s interpretation of sensations as it is about the sensations themselves.
These episodes of abnormal sensations are unpredictable and often leave me with a lingering sense of unease, as they can appear suddenly and without warning. Dysesthesia is a silent, invisible symptom of MS that not only causes pain but also distorts how the world feels—reminding us that our bodies can sometimes feel like foreign terrain, even to ourselves.
ITCHING
We’ve all experienced an itch that just won’t quit, but for those living with MS, itching can become a relentless companion—sometimes lasting for weeks, months, or even longer. For me, it’s most often my scalp. Before my diagnosis, I treated myself for lice not once, but three different times. I couldn’t think of any other explanation for the incessant itching. Despite never finding lice and the treatments doing absolutely nothing to help, I felt some relief just knowing I was trying to solve the mystery of this maddening sensation.
The itch of MS isn’t your typical irritation caused by dry skin or a bug bite. It’s neurological in origin, a symptom of nerve damage where the brain interprets faulty signals as an itch. The National MS Society suggests that it might be triggered by environmental factors, as people with MS are more sensitive to external stimuli. That’s certainly possible—I’ve always been hypersensitive to my surroundings.
Yet, in my case, the itch seems to have a mind of its own. I’ve changed environments, adjusted routines, and eliminated potential irritants, but the itch persists as though oblivious to my efforts. It’s a curious and frustrating reminder that not all symptoms can be easily traced to a specific trigger or soothed with a simple remedy.
This constant, unexplained itch isn’t just a physical sensation—it’s a mental challenge, a test of patience. While it may never truly go away, understanding that it’s a neurological symptom and not “all in my head” has helped me find some peace amid the discomfort. For now, I’ve learned to embrace what relief I can and to laugh at the absurdity of treating myself for lice when the real culprit was my own misfiring nervous system all along.
BOWEL INCONTINENCE, DIARRHEA OR CONSTIPATION
Of all the symptoms MS throws my way, this one takes the crown: bowel issues. It’s not a glamorous topic, but it’s a reality that many of us with MS face. And let me tell you, it’s not just a minor inconvenience—it’s life-altering.
Bowel symptoms can range from constipation to incontinence, and they often come with little warning or control. These unpredictable moments can prevent people with MS from participating in activities they love, robbing them of spontaneity and joy. For me, these issues have frequently stood between me and time with family and friends.
There have been events I couldn’t attend, outings I’ve missed, and moments I’ve longed to be part of but couldn’t because of the constant worry about what my body might decide to do that day. The unpredictability and embarrassment are exhausting, both physically and emotionally.
While I’ve learned to navigate many of the challenges MS presents, this symptom remains the one I hate the most. It’s isolating, frustrating, and a stark reminder of how deeply MS can impact every aspect of life, even the ones we wish could remain private
Conclusion
Living with MS is a journey filled with challenges, surprises, and resilience. Each symptom has its own unique way of impacting daily life, some in visible ways and others quietly beneath the surface. From the unrelenting fatigue to the strange sensations of dysesthesia, from the frustrations of bladder and bowel dysfunction to the isolation caused by balance and coordination struggles, every part of this disease reminds us how intricate and interconnected our bodies truly are.
Yet, in the face of these challenges, we persist. We adapt, we find solutions, and we continue to live meaningful lives despite the hurdles. Sharing these experiences is a way to connect, to educate, and to remind others that they are not alone.
MS may shape the path we walk, but it does not define who we are. With understanding, support, and a determination to keep going, we can navigate this journey together—finding strength even in the hardest moments and celebrating every victory, no matter how small.
About the Author
Leisa Watkins
Leisa Watkins is the founder of Cultivate An Exceptional Life, and her mission is to empower individuals, particularly those with chronic illness, to live a life full of joy, abundance, and purpose. She believes that despite life’s challenges, it is possible to break through barriers and create a life you love. With a focus on supporting those facing chronic health issues, Leisa helps people navigate roadblocks and find strategies to thrive. She shares practical tips on overcoming obstacles and getting more out of life through her Instagram channel. Join us as we embark on a journey to cultivate an exceptional life, no matter the circumstances.
Medical Disclaimer
This article is for informational and educational purposes only and should not be considered medical advice. Always consult with a qualified healthcare provider for personalized medical guidance regarding symptoms, diagnosis, or treatment options. Do not disregard professional medical advice or delay seeking it because of information provided in this article. If you have questions about your health or medical condition, please contact your doctor or a licensed medical professional.
