You Know You Have MS When
Last updated: April 2023
You are probably all too familiar with the typical symptoms associated with having multiple sclerosis (MS). Things like spasticity, problems thinking, fatigue, and difficulty with mobility, among many others. However, there’s so much more to having MS than what one would find in a textbook.
We wanted to know more about your everyday life with MS, so we asked members of our Facebook community to fill in the blank for the statement: “You know you have MS when ____.” We heard from over 150 of you, and here’s what you had to say!
You have difficulties with mobility
- You walk like your 76-year-old mother and you’re only 41.
- When at 42 your kids are taking care of you.
- When you trip a lot, and have double vision.
- Your legs go out from under you and your brain doesn't know it.
- When you're standing still on a level floor and just tip over.
- You keep tripping up over nothing and you continually drop things.
- When you can't speak correctly and have to hold onto walls because your balance is off.
- When no one realizes how hard you're trying to just keep up but everyone just keeps leaving you behind.
- You fall over when standing still or stop mid-sentence because you've lost your train of thought.
- You trip on air when you’re walking on empty ground.
- When you feel good enough to walk the dog and your legs feel like they are encased in cement after just going around the block.
- When you can't play with your kids or take a walk with your husband.
- You walk like you are dancing to Michael Jackson's “Thriller.”
- When your knees are locked as though there's a magnet holding them together!
- You get to work and wonder if you can lift your legs to get up the 4 stairs to get into the building.
- You trip over something earlier in the day because of "drop foot" on the left leg and before bedtime you look at your scraped toes and say, "What the heck happened to my toes?"
- Your legs are numb and you can’t walk very well.
- You can't stand without assistance.
The MRI techs know you by name
- When you know the MRI tech by his first name, and he remembers which arm you prefer to use for the contrast dye.
- When the MRI guy knows you by name.
You look like you've had too much to drink
- When you look drunk walking but have not had or been near any alcohol!
- You walk like a drunk even though you don't drink.
- When you can’t pass a field sobriety test sober.
- When you walk like you’re drunk.
- You walk like you're drunk and haven't had the pleasure of drinking.
The weather takes a huge toll on your body
- Sunlight/heat/humidity in the summertime drive you indoors like a vampire, when previously it was your favorite season of the year.
- Hot weather kicks your b-u-t-t.
- You're the only one in the room saying, "Is it hot in here?"
- When 70 degrees feels like you’re standing inside of an oven and everything goes numb and blurry.
- When you can't do any outdoor activities due to the heat.
- When 69 degrees is too hot for you and you sleep with fans blowing on high at you with multiple ice packs.
- When summer heat hits the triple digits and you can barely breathe.
You feel like you’re losing your mind
- What was the question?
- You are in the middle of a conversation and you forget what you were supposed to be talking about or you can't remember the word you wanted to say!
- You lose your train of thought mid-sentence.
- When you walk into a room and forgot why you went in there. Or going out to eat and your brain is literally blank when you’re supposed to choose.
- You have the hardest times trying to say what you want to say because your words come out making no sense.
- When your words get jumbled up at the end of a sentence.
- Umm...what was the question?
- When I struggle to speak and can't form and remember words.
- You describe your symptoms and your neurologist looks at you as if you were speaking Greek.
- When you forget everything.
- You get confused when there is too much going on around you; you can't even place an order at a fast food place.
- When you can’t remember anything and can’t get your words together.
- You can't remember anything.
- You forgot you had MS.
Everyone thinks you look good, so you must be fine
- When everyone thinks you are normal and they say let's go, get with it.
- Your friends and family think you're fine (you look the same) and are just being antisocial.
- When I have all these problems mentioned but I "don't look sick!"
- When you hear "but you look so good."
- Everyone thinks you look okay so you should be fine.
- You get angry hearing, "gee, you can't be feeling anything bad...you look too good."
- When you want to hit the next person to say "But you look so good!"
- You feel awful and can't think straight but look awesome.
Fatigue overwhelms you
- When you never, ever feel like you're well rested or have gotten enough sleep.
- You’re so exhausted (and you just slept most of the night) and you get worn out just getting up to wash your hair.
- When you wake after 8 hours of sleep (if it's a good night without insomnia) and feel like someone used your body to run a marathon, got mugged on the way back, and returned it for you to get out of bed with.
- When my daughters tell me all I do is sleep and that I'm sick all the time.
- You get a full night of sleep and wake up tired.
- When everyone says, "You look tired. What'd you do last night?" and you reply, "Nothing. I'm always tired."
- You're too tired to get up but you just end up lying around in bed with anxieties about what you should be doing.
- You wake up with a little bit of energy, bounce upstairs, and fix breakfast. Ah, there went the energy. Exhausted by this simple task, you must lay down again to rest.
- Your battery depletes after 45 minutes of walking and you become a complete physical mess on your feet.
- When you are tired or fatigued all the time.
- You can't find the energy to take a shower.
- You are so fatigued you can hardly get out of the chair to take a shower, and you know when you finish you won't have the energy left to go anywhere or do anything, even in the wheelchair.
- You're tired and dizzy all the time.
You're in constant pain
- Your body feels like you got into a fight with Mike Tyson, got run over by a semi, and were then kicked over to the side of the road. You can't get up, even if you wanted to. You are in excruciating pain, everywhere, and it feels like you're half dead.
- When you’re screaming from pain as what feels like loose electric wires whip out of control at the base of your spine.
- Limbs hurt for no reason.
- When you feel like you are being stabbed and you have a tingling feeling all over.
- Your vision is blurred but you never complain and you smile regardless.
- When your feet feel like they are on fire or frostbite.
- When you get those unexpected zaps of excruciating pain in your face, arm, leg, and you have to stand there trying not to scream.
- When you feel continual electric shocks down one whole side of your body that are strong enough to make you gasp aloud. When your knee just buckles when you least expect it to.
You feel like you are losing control of your body
- When the top of you starts to walk and your legs don't get the memo in time.
- Your head goes one way and your legs another.
- When you have to look at your hand and tell it to move.
- When you're eating and your arm suddenly jerks and the food goes flying across the table.
- One of your limbs decides it's just not going to function, right about when you need it to.
- When I pee my pants in the middle of a store.
- When you are in the market and the firemen are grocery shopping and they stop you because your face is drooping and you are confused and they think you have had a stroke.
- You do a great impression of Ray Charles and go blind.
- When you go from 0 to pee in 2 seconds flat! Where's the restroom?
- When you wake up one morning and you’re paralyzed on one side of your whole body.
You feel uncomfortably numb
- Your legs are numb and your vision isn't right.
- When you can't feel your fingers but you feel like you're walking on rocks.
- Numbing leg and a hug that does not stop hugging.
- You feel like you are sitting in a wet bathing suit because your b-u-t-t is numb.
- When you are numb and tingly and have burning sensations all over.
- When you feel like you have warm pee running down your legs and go to feel and nope it's just your nerves.
- Your legs feel like rubber.
Tell us more about your everyday life with MS! How would you complete the statement, "You know you have MS when____"? Please share your thoughts in the comments!
Have any of the following helped to reduce your pain? Select all that apply.