You know you have MS when...

You Know You Have MS When

You are probably all too familiar with the typical symptoms associated with having MS, like spasticity, cognitive impairment, 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 our Facebook community to respond to the statement, “You know you have MS when____.” We heard from over 150 of you, and here’s what you had to say!

Difficulty with mobility

  • You walk like your 76 year-old mother and you’re only 41
  • 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; when at 42 your kids are taking care of you
  • Your hands are asleep and they don’t wake up, of course your feet too, hence tripping and dropping
  • When I kept falling, tripping, and my legs hurt
  • 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 four 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

When everybody knows your 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 appear to have had too much to drink

  • When you look drunk walking BUT have not had any 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 u 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 & everything goes numb and blurry
  • When you can’t do any outdoor activities due 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 foot place
  • When you can’t remember anything and can’t get your words together
  • You can’t remember anything
  • You forgot you had MS

People assume that you are fine

  • When everyone thinks you are normal and they say let’s go, get with it
  • Your friends & family think you’re fine (you look the same) and are just being anti-social
  • 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 ok so you should be fine.
  • You get angry hearing” gee, you can 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 & 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 are so tired that you cry and you do, and no amount of sleep helps

You seem to be 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 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 stand there trying not to scream
  • When you’re screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
  • 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 fireman 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 two 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 r 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 just your nerves
  • Your legs feel like rubber

Tell us more about your every day life with MS! How would you complete the statement, “You know you have MS when____”? Please share your thoughts in the comments!

Comments

View Comments (28)
  • kleiney
    2 months ago

    …your bad spastic leg goes ramrod straight any time you have to pee.

  • Tashas3
    3 months ago

    Oh my goodness!!! im just over it all!!!

  • ShelbyComito moderator
    3 months ago

    We hear you, @Tasha3. Thank you for commenting. You are not alone! – Shelby, MultipleSclerosis.net Team Member

  • LeeAnn
    4 months ago

    You know you have MS when your head and hands shake uncontrollably. I remember going to the dentist to have some work done and when he gets done I’m shaking so bad that I have trouble functioning. Because of this I stopped going and won’t go unless I have no choice. I had to have a tooth pulled because he couldn’t get it numbed and root canals forget it!

    Know one knows what you go through and hopefully they never have to experience what we do.

  • Nunya
    2 years ago

    According to the doctors I do not have MS. I feel like I have some form of MS BUT CANT SEEM TO CONVINCE THEM. I’ve been diagnosed with spinal stenosis, degenerative disc disease, chronic fatigue, IBS, Fibromyalgia, nerve problems, tinnitus etc…. and now possibly gastoparwnthesis as well as bladder and bowel issues. how can one person have all those diagnosis. Makes no sense. I could check off 90% of the symptoms listed. So frustrating. I’ve had left leg and hip pain for yearsssssss from head to toe. It even caused me to have salpingo oopalectomy only to find out it did not remove the pain. Because only small or mild white matter showed up on brain MRI years ago they determined I do not have MS. Symptoms come and go depending on environment and stress. I have episodes of extreme difficulties. But anyway. Now I just had a lumbar MRI because I am having so much pain on my left side when walking or sitting. Yesterday I turned to do something and almost fell over like someone spin me in circles. all I have is medical through the VA because of my disability rating. Can’t afford a spinal tap to see if MS shows up that way. Anyway……

  • Jurassica
    7 months ago

    Hi again Nunya,
    Forgot to say started hard with onset of symptoms in the beginning with drop leg (no control of my right leg), urinary incontinence and body just giving out completely (extremely flad muscles especially through core and legs) and mentally and emotionally just deteriorated.
    Thanks again!

  • Jurassica
    7 months ago

    Hi Nunya,
    I know this is old comment and post but I have almost all the symptoms of ms daily, but no MRI with contrast only without and nothing remarkable in the MRI readings. I too get seen through VA and too have dx ddd, fibromyalgia, nerve problems with incidental findings scoliosis, spina bifida occulta and Perneural cysts on my spine that they say are unremarkable and not causing my pain so after testing negative for lupus, got diagnosed fibromyalgia. Just wondering if you have any updates. I am referred outside of the VA for neurology and will see if they know anything further. Best of luck to you.

  • Divinesolution1
    2 years ago

    When you can’t walk and chew gum or have a conversation at the same time because you will trip.
    When you have to yell at your leg to get it to move and it still doesn’t listen.
    When you feel normal but then are surprised when you get up out of your chair or bed then fall down.
    When you feel like someone is randomly tripping you from behind, but there is nobody there.

  • DonnaFA moderator
    2 years ago

    Hi Divinesolution1, Thanks for being part of the community and for sharing your thoughts! -All Best, Donna (MultipleSclerosis.net team)

  • sllong
    3 years ago

    When you need to turn left to go into your bedroom. Your head goes left but the rest of your body goes right – smack into the door jam

  • mascha
    3 years ago

    You know you have MS when you can’t plan your day the night before.

  • Cari
    3 years ago

    ~ You go to change direction when you are walking… Your body changes direction, but your feet continue on in the same direction you were originally going.

    ~ You tell the kids, “Put the laundry in the dishwasher” and then get pissed when they don’t.

    ~ When you are driving back from some place you are tempted to say, “I’ve never been here before” (Yes.. You have. We were just going the opposite direction)

    ~ Your ass is so numb, you pass gas and don’t even know it until someone tells you.

    ~ You take Tecifera, and are asked, “Are you embarrassed”? At least once a day because your face is BRIGHT red.

    ~You are told “you look great, what have you been doing with your self?” And you actually feel like crap.

    ~ You choke on air.

    ~ You could come up with 1,000+ more of these but don’t want to be self depreciating or depressing to others, because they might want to wallow, although you would find them funny. Everyone here is affected by this disease, how we choose to deal is ours individually.

  • 2 months ago

    All true but you still gave me a chuckle.Have a great day!

  • ShawnInFL
    4 years ago

    You know you have MS when you stop complaining about symptoms because the doctors test you for many other things like carpal tunnel and then tell you “it’s all in your head”. Well they were right–in the myelin to be exact!

  • alchemie
    4 years ago

    You know you have MS when, its 100F and you have to wear ALL white, when originally you wore ALL black! 🙁

  • mamak1118
    5 years ago

    You know you have MS when you read these comments and want to forward them to everybody you know, or who knows you, or who might see you in the future…just so they know you’re not crazy!

    It makes me feel validated to see everybody’s comments. So often I chastise myself, feeling like maybe I’m making excuses for myself and I’m just being lazy. But you’ve all hit the proverbial nail on the head. Thanks for letting me see I’m not alone. 🙂

  • kleiney
    2 months ago

    This is the best post here. Thank you, you hit exactly what I was reacting with.

  • sllong
    3 years ago

    Agreed!!!

  • BevDengler
    5 years ago

    I’ve been diagnosed with RRMS since 1996 & until recently I handled it on my own (it is wonderful to be in a support group). After reading all of the “You know you have MS_____________” I have laughed & cried because they are so true but it is something we all live with. I have 2 more to add:

    You know you have MS when you need a nap before you go to the store to get coffee & need a nap again before you put it away.

    You know you have MS when you decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park.

  • 2 months ago

    When you’re happy and you know it but can’t clap your hands! 😉

  • CONNIE NARAD
    5 years ago

    YOU KNOW YOU HAVE MS WHEN THE AIR CONDITIONER IS CONTINUOUSLY RUNNING AND YOU ARE STILL HOT AND YOU CHECKED OFF ALL THE PREVIOUS COMMENTS!

  • Dianna lyn
    5 years ago

    Funny you say that, I live in Hawaii and in the mountains, the weather here is beautiful, but I still get hot in the 70’s and everyone else is perfectly comfortable..so true!

  • Cathi
    5 years ago

    Love this because it’s all so true. Hate this because it’s all so true.

  • Susan
    5 years ago

    You know you have MS when at age 44 your pill planner is larger, and has more pills in it than your 82 year old mom’s pill planner!

    You know you have MS when you must have a plan B, C, D, etc.!

    You know you have MS when you “feel” noises that go straight to the bone with subsequent weird pain!

    You know you have MS when you have to lean your elbows against the shower wall to wash your hair!

    You know you have MS when it takes HOURS to pay bills and organize the family calendar when for 20 years you were a very successful RN Manager & a champion multi-tasker!

    You know you have MS when your body is a better predictor of weather changes than the weather person!

    However, I am so grateful that there are meds that I can afford that vastly impacts my quality of life for the better, and that I can manage my pill planner independently. I am thankful that I have supportive people in my life that understand plan B, C, D, etc. I am grateful that I can hear, and that I can still manage my personal care alone. I am thankful that I can still keep our finances and activities in order. I am still able to cognitively perform the continuing education to keep my RN license active…for my own personal satisfaction. I am glad that I am still mobile.

    Yes, I have had many changes in my life that have led to limitations that I have to work with, but I have much more to be thankful for…GOD has been merciful, extending grace for my every need.

  • Cathy
    5 years ago

    You know when you have MS for all the reasons listed and you don’t know whether to laugh or cry because you so get it to what they are going through. It’s like we are made of the same mold but yet feel like we are made of none because the people without MS will just never understand what we are going through.

  • Paul
    5 years ago

    You know when you have MS (diagnosed in 1991) and you read this and check off each item and the tears just begin to fall from your eyes and you feel worthless because you had to give work last September and you have to prove to the government that you cannot work anymore! It makes you want to just give up and disapear.

  • Lamm
    5 years ago

    Hi Paul, Like Dianna Lyn said don’t give up !! I had to quit work before I was even diagnosed with MS. It took me almost three years to get on disability/SS but I wasn’t about to give up !!! Just keep repeating the process if they say no. I finally got what is mine in the first place, SS but I needed the insurance also, got that as well it was a long and repetitive road to get there. and just want to add … you know you have MS when you have all of the above symptoms listed. stay strong !!! 🙂

  • Dianna lyn
    5 years ago

    Don’t give up Paul..just be your own advocate in your case, make sure the judge has everything be needs to make a decent decision in your case, the lawyer don’t care about your case as much as you do..okay? That was my mistake..my judge couldn’t read certain documents..so make sure they are readable.

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