10 Things I Learned About MS That I Wish I Knew Sooner
Living with Multiple Sclerosis (MS) is like playing a game where the rules keep changing, and no one bothered to tell you the objective. It's unpredictable, expensive, and exhausting—but hey, at least it keeps life interesting, right?
Before my hand tremor started, I didn't know fuck all about MS. Like, nothing. I honestly thought it was something like muscular dystrophy and didn't give it a second thought—because why would I?
Along the way, I've picked up a few hard-earned lessons that no doctor, pamphlet, or overly perky wellness influencer bothered to share. So, grab your heating pad, settle in, and let's talk about the 10 things I wish I'd known about MS before this shit-show started.
1. Brain Fog Vibes
On those really bad days, all you can do is sit on the couch, stare at the TV, and wonder how your brain went from being a well-oiled machine to buffering like it's running on dial-up. It's not just frustrating; it's downright debilitating. And the kicker? You never know when it'll hit or how long it'll last.
Here's what I wish I'd known: brain fog isn't something you can "snap out of," no matter how hard you try. Be kind to yourself on those days. Give yourself permission to do nothing if that's all your brain can handle. Trust me, the world will still be there when your mind decides to reboot.
2. Doctors Don't Know Everything, and That's Okay (Kind Of)
When you're diagnosed with MS, you assume the doctors have all the answers. Newsflash: they don't. Some are fantastic—empathetic, knowledgeable, and ready to help you navigate this shit-show. Others? Well, let's just say they'll have you questioning if they even glanced at your chart or even know anything about MS aside from the footnotes they were taught in med school a few decades ago.
Here's the hard truth I wish I'd known: sometimes, you just have to fire a doctor. Maybe they aren't helping, or maybe they don't know how and can't just admit they're out of their depth. Or maybe they specialize in gaslighting. Think of it like taking your car to the garage for new tires. If the mechanic decided to swap out the transmission instead because maybe that would help, would you stick around? Hell no. You wouldn't even pay them for the services you didn't ask for. You'd find someone who actually knows what they're doing. The same logic applies here.
Not every neurologist is equipped to handle MS. Some will throw random treatments at you and hope something sticks. Others will brush off your symptoms because they're too proud (or too clueless) to admit they don't have the answers. The key is recognizing when you've hit a dead end and moving on—because wasting time with the wrong doctor can delay getting the care you actually need and your MS will progress while you're wasting time with a unhelpful doctor.
The good news? There are great doctors out there. You just have to find one who listens, admits when they don't know something, and treats you like a partner—not a project or just another box to check off for their productivity quota. It might take a few tries, but trust me, when you find the right one, it's worth every awkward first appointment and every frustrating fight to get the referral.
3. Your Symptoms Are as Random as a Bingo Card
MS symptoms are like playing a never-ending game of bingo, except instead of shouting "Bingo!" in triumph, you're muttering "WTF now?" in defeat. One day it's numbness in your leg; the next, it's brain fog so thick you forget how to spell your own name. Then there's the fan-favorite: random stabbing pains that show up out of nowhere, like your nerves are auditioning for a slasher movie. There are over 50 know symptoms of MS. Have fun with that grab-bag or randomness.
What I wish I'd known is how truly unpredictable this disease is. There's no pattern, no logic, no "if I do this, then that will happen." Nope. MS doesn't give a shit about your plans or your schedule—it's a chaos machine. One day you might feel fine (relatively speaking), and the next, you're Googling "why does my left eye hurt when I look left?" like it's your new hobby.
And just when you think you've got a handle on your particular bingo card, MS likes to throw in a free square. Pathologic itching? Check. Spasticity in your toes? Why not! Random bouts of vertigo while standing still? Sure thing! The sheer randomness can make you feel like you're losing your mind, but trust me, you're not alone in this.
The best advice I can give? Roll with it as best you can. Keep track of your symptoms—write them down, put them in your journal. Having a record not only helps your doctors, but it can also remind you that you're not imagining things. And when MS tries to throw you off, remember: you're not playing this game alone. You've got a whole community out here who understands just how much this bingo card sucks ass.
4. Asking for Help Isn't Weakness, It's Strategy
Here's what I wish I'd known: leaning on others isn't a sign of weakness. It's a strategy for survival. Whether it's asking a friend to run errands, using a motorized cart at the grocery store, or even delegating household chores, these aren't signs you're failing—they're signs you're adapting. MS forces you to prioritize your energy like it's a precious resource because, honestly, it is.
It's not just about conserving energy, either. Asking for help opens the door for people to show up for you. Most of the time, your friends and family want to help; they just don't know how. Giving them specific ways to support you—whether it's picking up prescriptions, helping with meal prep, or even just sitting with you on a bad day—can actually make your relationships stronger.
And if someone gives you attitude about needing help? Screw them. You're doing what you need to do to take care of yourself, and that takes more strength than struggling in silence ever will. So, the next time you're hesitating to ask for help, remind yourself: this isn't weakness—it's strategy. And you're playing the long game.
5. MS Is Expensive As Hell
If there's one thing no one warns you about, it's how MS comes with a hefty price tag. Between missed work for endless appointments, sky-high co-pays, over-the-counter vitamins, and paying extra for healthy food (because apparently, processed snacks are off the menu), MS will take a toll on your wallet as much as it does on your body.
And let's not forget the hidden costs. Mobility aids, adaptive equipment, heating pads, cooling vests, and even comfortable shoes that don't make your feet want to riot—they all add up. Oh, and if you're lucky enough to need specialty medications or infusions, prepare to battle your insurance company for coverage, because those treatments can cost more than a new car.
Then there's the emotional spending. When MS has you feeling like crap, suddenly splurging on takeout or retail therapy becomes a form of self-care. And sure, it's great in the moment, but it doesn't exactly help the budget.
What I wish I'd known? Planning ahead is crucial. Track your expenses, prioritize what you really need, and don't be afraid to ask for help—whether it's applying for assistance programs, using patient advocacy groups, or getting creative with budgeting apps. Most importantly, give yourself grace. Living with MS is hard enough without adding money stress to the mix. You're doing the best you can, and that's what matters.
6. Not All Supplements Are Magic, But You'll Try Them Anyway
When you're diagnosed with MS, the floodgates of supplement recommendations open wide. Some come from doctors, others from well-meaning friends or a quick Google search at 2 a.m. The truth? Not all supplements are magic, but you'll still try them because, let's face it, when your immune system is staging a coup, you're willing to throw just about anything at it to regain some control.
Take Vitamin B12, for instance. It's great for brain health and energy levels, which is why it's one of the most recommended supplements for MS. But does it make a noticeable difference? Maybe, maybe not.
Then there's Magnesium, the unsung hero for spasticity. If your muscles feel like they're auditioning for Cirque du Soleil without your consent, magnesium might help calm the chaos.
Vitamin D is another big one. Every neurologist I've seen has told me to take it, but the reasons are always vague—"It's good for MS." Sure, okay, I'll take it, but it's not like I'm suddenly going to start running marathons. That said, there's a lot of research linking low vitamin D levels to MS, and my levels have always been low. We're talking prescribed high-dose supplements low. So, while I might not notice immediate changes, I figure it's worth staying on top of it—because if there's one thing MS doesn't need, it's another excuse to act up
Meanwhile, there's Vitamin C, which becomes your best friend if you're on a B-cell-depleting DMT. Why? Because when your immune system is suppressed, you'll do anything to avoid catching every germ in the universe.
And then there's Vitamin A, which none of my doctors ever mentioned. When blurry vision started creeping into my life, I decided to try it on a whim, and you know what? It actually helped—at least a little. I'm allergic to so many medications that I've been assigned a pharmacy doc who sits down with me twice a year to go over everything I'm taking, just to make sure nothing's clashing or making things worse. When she saw the vitamin A on my list, she questioned it at first—until she dug into the research and discovered that vitamin A can actually help with inflammation and eye health. Who knew? Sometimes it pays to experiment… carefully.
Here's the thing: supplements aren't a cure, and they're not guaranteed to work. But they can be part of the toolkit. The key is being strategic—don't just throw money at a shelf full of vitamins. Talk to your doctor (or pharmacist, because they tend to know their stuff), do some research, and figure out what might actually help with your specific symptoms.
At the end of the day, supplements won't fix everything, but if they make even a small difference, they're worth considering. Just don't expect them to work miracles—this is MS we're talking about, after all.
7. People Mean Well, but They'll Say the Dumbest Things
Then there's the endless stream of "helpful" suggestions. Have you tried yoga? Have you gone gluten-free? My cousin's friend's neighbor has MS, and they swear by celery juice. Oh, and don't forget the miracle cure they read about on the internet—usually something ridiculous, like rubbing essential oils on your feet while meditating in the moonlight.
What I wish I'd known? People aren't trying to be jerks (most of the time). They just don't know how to react, so they fill the silence with whatever pops into their heads. It's okay to smile and nod, to roll your eyes when they're not looking, or to outright shut them down if you're not in the mood. "Thanks, I'll keep that in mind," works wonders when you just want the conversation to end.
And sometimes, their comments are unintentionally funny. Like the person who asked if MS is contagious or the one who confidently declared, "At least it's not real cancer." These moments are pure comedy gold—once you're past the initial irritation, of course.
The truth is, people will always say dumb things, but you don't have to let it get to you. Find your people—the ones who understand, who get it, and who know when to offer advice and when to just hand you a blanket and a snack. Because while the world is full of clueless comments, it's also full of empathy and support. You just have to filter out the noise.
8. Heat Is Your Arch-Nemesis (But Cold Isn't Much Better)
If you have MS, chances are good that heat is your sworn enemy. A sunny day might seem delightful to most people, but to those of us with MS, it's like stepping into Satan's anus. Even a small temperature increase can make symptoms flare up—fatigue doubles down, vision goes blurry, and you're left feeling like a melting popsicle.
But here's the kicker: for many of us, the cold isn't much better. Sure, you're not dealing with heat-induced exhaustion, but icy temperatures come with their own special brand of torture. Stiff, spastic muscles feel even tighter in the cold, and let's not forget the joys of Raynaud's, where your fingers and toes turn into ice blocks. Sometimes, it feels like there's no winning—Mother Nature's just out to screw us either way.
What I wish I'd known? It's all about preparation and knowing your limits. For the heat, cooling vests, fans, and cold packs are lifesavers. I've even been known to carry a spray bottle of water for a quick cooldown. For the cold, layering up, heating pads, and cozy socks are your best friends. Pro tip: heated blankets aren't just for bedtime—they're for survival.
And the most important lesson? You don't have to apologize for needing climate control. If you need the air conditioner blasting in July or the heat cranked up in January, so be it. The people around you might complain, but hey, you're the one managing a rebellious nervous system. Let them layer up or strip down—you're just trying to survive.
9. MS Doesn't Take a Day Off—But You Should
Resting doesn't mean you're giving up or being lazy. It's how you recharge your batteries so you can handle the next curveball MS throws your way. Whether it's taking a midday nap, skipping that social event, or just having a "do-nothing" day on the couch, listening to your body is critical.
Of course, guilt loves to creep in—especially when you're watching everyone else live life at full speed. But here's the truth: overdoing it will only make things worse. MS doesn't care that you have a deadline or that you want to join your friends for a night out. If your body says it needs rest, it's best to listen.
Taking a day off from the chaos is how you stay in the game. Think of it as a pit stop: your body needs time to refuel so you can keep going. Because, let's face it, MS sure as hell isn't clocking out anytime soon.
10. You're Not Alone
One of the scariest parts of being diagnosed with MS is how isolating it can feel. When your own body feels like it's betraying you, it's easy to think no one else could possibly understand what you're going through. But here's the truth I wish I'd known: you're not alone.
The MS community is nothing short of amazing, and if you know where to look, you'll find support, understanding, and even a little humor when you need it most. BlueSky, for example, is filled with people who get it. It's not a formal support group or a rigid structure, but it doesn't need to be. Post about MS—whether it's a question, a rant about your shitty day, or just a random thought—and you'll find a flood of people who care, who respond, and who make you feel like part of a tribe.
Beyond BlueSky, there are incredible resources like The MS Society, which connects people living with MS through shared stories and experiences. Another great tool is Overcoming MS, which offers a wealth of information about living with MS and even has a fantastic app to help you navigate diet, exercise, mindfulness, and more. It's a one-stop shop for building a holistic approach to managing MS, and it's a game-changer when you're feeling overwhelmed. Those are just a few, there are many other programs/groups out there for MS.
The best part? You don't have to go it alone. There are people out there who know exactly what you're dealing with—whether it's the fatigue, the brain fog, the pain, or just the mental toll of living with an unpredictable disease. These communities are full of folks who will listen without judgment, share their own tips and stories, and remind you that even on your worst days, you're part of something bigger.
So, whether you're finding your people online, in a local support group, or through apps and resources, just know this: you're not fighting MS by yourself. There's a whole community out here ready to have your back.
Final Thoughts
Remember, you don't have to figure it all out at once. MS doesn't come with a handbook (though it probably should), but the lessons you learn along the way will help you navigate this rollercoaster. And most importantly, you're not alone in this. There's an entire community of people who get it—who are ready to support you, laugh with you, laugh at you and remind you that even when MS tries to knock you down, you're stronger than you think.
So, take it one day at a time, give yourself grace, and don't be afraid to rant, rest, or lean on others when you need to. MS might suck, but you've got this.
