What MS really feels like

What Multiple Sclerosis (MS) really feels like

Those long lists on medical sites that describe Multiple Sclerosis really don’t tell the full story. They list out symptoms that make MS sound no different than a vacation to the hospital for a broken toe. So here is MS according to someone who actually lives with it. Yes, there is humor in there somewhere. You just gotta laugh at MS or you will go crazy.

MS Fact #1: FatigueFatigue

Much like someone who has just hiked 20 miles up a steep hill after two days of no sleep while carrying a backpack loaded with rocks on the hottest day of the year…that is fatigue. It’s that moment when your legs can no longer hold you up and every muscle, bone, and even eyelid hurts. Then as soon as you sit down (or more like fall down) you are asleep. A tornado could blow by and you would sleep right through it.


MS Fact #2: Walking difficulties
Walking Difficulties

No we aren’t drunk, but imagine those times when you have experienced being drunk yourself. You attempt to walk across the floor with full intentions of simply going from your chair to the door but end up walking into walls and tables instead.


MS Fact #3: SpasticitySpasticity

A constant charlie horse in the legs is more like it, but sadly it’s not just in the legs. Any muscle can be affected. We also have a tendency to involuntarily twitch and kick without warning. So if you say something stupid and we hit you in the head…opps, we’re sorry. That was an involuntary spastic moment.


MS Fact #4: NumbnessNumbness

Do you remember a time when you were sitting on the floor with your legs crossed and your foot fell asleep? Now imagine living with that feeling every minute of the day, only it’s not just in your legs. Many of us have that very feeling in our arms, legs, face and body.


MS Fact #5: Vision ProblemsVision Problem

We don’t enjoy seeing two of everything unless it’s chocolate, or not being able to read an email on the computer because the words are blurry. Many of us will lose color clarity as well. So, if we are wearing uncoordinated clothes, don’t laugh. We didn’t know we were wearing bright neon green.


MS Fact #6: Dizziness & vertigoDizziness & Vertigo

You know that feeling you get when you are sure you’ve entered an unknown universe for a split second because you stood up too fast? Everything goes blank and things in the room begin to move around? Yeah, we live there. Who needs an amusement park when we have a roller coaster in our heads everywhere we go. We can tilt our head a certain direction and we’re off on the most exhilarating ride of our life.


MS Fact #7: Bladder & bowel problemsBladder & Bowel Problems

Long bathroom lines are our enemy. We can’t hold it and will give you a reason to mop the floor if you don’t let us cut in line. We can go from the extreme of not being able to go to “I gotta go NOW!” One positive in it all, if you ever need to know where the nearest bathroom is…just ask. We know the fastest escape route to every bathroom on the planet.


MS Fact #8: Cognitive difficultiesCognitive Difficulties

We forget often: scheduled appointments, birthdays, someone’s name, words, phone numbers and even how to do something we’ve done for years. Multitasking is out of the question. And asking us to deal with a difficult situation that requires deep thought may be met with a blank stare because we simply can’t get our brain to work.


MS Fact #9: PainPain

Yes, we experience pain. Lots of it, too. It’s not pain like when someone is stepping on your foot either. We are in pain because our nerves are misfiring and sending incorrect signals to our brain. And just in case you were wondering, Tylenol doesn’t help. You have to stop the communication process, not the actual pain. Sadly, MS pain never gives us a day off or allows for a time-out.


MS Fact #10: Swallowing problemsSwallowing Problems

If you invite us over for dinner and offer us a deliciously cooked steak and we decline, choosing to eat a bowl of soup instead, don’t be offended. Sometimes the effort of chewing and then trying to swallow what we just chewed is difficult. It’s MS’s fault, not your cooking…although, if you met my neighbor you would have a different story to tell.


MS Fact #11: Heat & cold intoleranceHeat & Cold Intolerance

Heat causes chaos to our already damaged nerves making our symptoms a hundred-trillion times worse than normal. Add humidity to the mix and it becomes an unbearable situation. The cold is just as bad for many of us. Someone once said that there’s a place where the temperature is perfect all year long. It’s call “My Imagination.” Have you heard of it?


MS Fact #12: Speech problemsSpeech Problems

Aside from the long pauses we take as we search to remember words, our voice can sound weak, winded, choppy and soft. Many times people will ask us to speak up, and although we would like to and even try, we can’t seem to get the words out any louder Drive-thru ordering can be comical…”So, you want lettuce and popcorn on your hamburger? Really?” Regardless, we have a lot of wisdom, so pause and take the time to hear it.


MS Fact #13: Emotional changesEmotional Changes

Mood swings are real and we have them more than we like to admit. We have been known to burst out laughing at the most inappropriate times, like when someone is sharing a sad story about how their fish died. We also cry for no reason, get angry faster than normal and become extremely frustrated at things that never frustrated us before. After all, our life has flipped upside down and we are living in a world we don’t understand anymore.


 MS Fact #14: ItchingItching

Oh, the terrors. Itch, itch, itch…scratch, scratch, scratch…and not a mosquito in sight. We probably look like a ninja contortionist as we uncontrollably scratch at different parts of our body without any visible reason, but when our skin itches we just want it to stop. We have been known to scratch our skin raw in the process.


MS Fact #15: TremorsTremors

No, we don’t have Parkinson’s Disease…although it does look similar. Our hands, head, and sometimes whole body, can go through bouts of uncontrollable shaking and we can’t make it stop. We would make a good breakfast chef if anyone’s hiring. When it comes to cooking scrambled eggs we could whisk those eggs to pure fluffiness.


MS Fact #16: Breathing problemsBreathing Problems

MS can cause muscle weakness in our respiratory muscles giving us one of the most uncomfortable hugs ever. The MS Hug feels like a boa constrictor has wrapped itself around our torso and refused to let go. Good news: we are still breathing. Bad news: we have yet to discover the secret to breathing fire. I blame my breathing difficulties on the fact that my dad took my nose when I was 3 years old and forgot to give it back.


 MS Fact #17: Hearing lossHearing Loss

Hearing loss, fluttering sounds, and ringing in the ears can be frustrating. For many, it feels like water has been trapped in the ear muffling sounds. Between that and the ringing, we carry around our own heavy metal band in our head. Although, sometimes our lack of hearing can be voluntary due to people being ignorant and saying stupid things that we don’t want to regret responding to later.


MS Fact #18: Sexual problemsSexual Problems

Something people don’t like to talk about, but just because sex isn’t talked about doesn’t mean it’s not a problem. Numb body parts, disrupted nerve signals and emotional changes makes intimacy 100 times more difficult. Patience, understanding and lots of care is needed. Well, that and maybe some chocolate, or bacon…or chocolate covered bacon.


MS Fact #19: HeadachesHeadaches

Our headaches can be caused by many things: medications, lack of sleep, damaged nerve receptors, depression, a bladder infection, steroids, stress, and of all things… annoying questions. “Have you taken an aspirin?” is not an appropriate question to ask us about our pain. Neither is a response telling us it’s all just in our head. Really? MS…in our head? Who would have thought?


MS Fact #20: SeizuresSeizures

Not all seizures are the same. It’s possible for us to have the typical kind with uncontrollable jerking movements, but we can also experience lapses of consciousness without any movement at all, experience a “drop attack” where our legs turn to jello causing us to drop to the floor, and have moments when we appear to be wide awake but are completely non-responsive. Those are all considered types of seizures not new dance moves.


MS Gets on My NervesMS WarriorMS Superhero  


About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

248 replies
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  1. Emma D
    Emma D says:

    Thank you for this post. I know some people with this and the article has given me the oomph to continue working on a book I’m writing to raise awareness. I commend all of you for being so amazing and positive. It’s inspirational to read through your comments. Thank you.

    • Ever Mojica
      Ever Mojica says:

      I have MS and my ow. Family are unable to help me out because they can’t even help me out even when the doctor told me to go tothe nNero they much rather give me excuses not to mention they want to cash in the $ money from the IRS from a person who is disabled my own family is my enemy

    • Chavonne Marie Sladek
      Chavonne Marie Sladek says:

      sometimes if you use autofill to enter your email it won’t work. try deleting the last letter (typically M from.com) and retyping it then submit. almost everytime my email is denied it is for that reason

  2. james stagno
    james stagno says:

    God has a rotten plan for you on earth however when you get to heaven each and every one of you will be blessed beyond belief . Be strong do everything right bring whoever your lord is into your life every day then slowly but surely your arrow will be pointing up to the spot where you will be Gods special angel ……………

    • Eddie
      Eddie says:

      Bless your heart and strength through the Lord Jesus.
      I was hit from behind on a motorcycle and flat lined. Parametics and my Guardian Angel brought me back. Not perfectly, but I could not make it in life ever without the power of Jesus.
      I aplaud you!!!!!

  3. Raul
    Raul says:

    Ha! This is awesome stuff really. You’ve put most of what I go through into words *claps *

    I love the fact that I came across this place by chance, but I’m so glad I did. Love the positivity that’s plastered all over. I’ve had Ms since I was 14. It sucked, but I’m not the kind to whine. Today, I’m nearly 26, sitting at home and trying to recover from my 16th relapse. Life can get really rough but reading stuff like this really lightens things up in my head. Thanks and take care of yourselves, all of you!

  4. Holly
    Holly says:

    I have not been diagnosed yet, im still waiting for my MRI results but as a 31 y/o female who has worked hard and worn a pair of heels on my nights out i have finally been stopped in my tracks! my thoughts are with all of you and i’m so sorry. I describe my pain as if i’m being stabbed my millions of spiders crawling through my body. My legs feel like they are being chopped up by axes and i constantly have that waking up from falling asleep pain in my legs arms neck and spine area. i’m weak, confused and of course frustrated. And that’s just a start of descriptions on my pain. I have only been dealing with this since january. ive fought approval from my insurance and I finally just had my mri’s after i was admitted to hospital for bloody murder pain. i had a migrane for 45 hours and JUST NOW my drs are listening to me. I am a strong soul and strong willed but even this is pulling me down. In the end i feel like ive been hit by a train. My only advice is, someone has it worse than me. I tell myself everyday that this is a reality check for me to change, slow down, learn and challenge myself> in the end i pray for strength. i pray for all of you that you have the courage and strength to wake up each day with optimism on your side! Im glad i found this posting to have support from people who understand.

    • Christin
      Christin says:

      Sending positive thoughts and strength! I was diagnosed in June! It’s a very hard reality to face but attitude is key!

      • Kerri
        Kerri says:

        Hi Christin I just read your post and it touched me. Also so many other posts touch me. Be strong and try to have a good attitude and have faith Lord gives us things that we can handle whether we know it or not. I just want to tell you a little bit about actually my husband situation but since were married it became my situation to because as he suffers I suffer along with him. He’s been diagnosed it’s a long story so I don’t know how long I’m going to make this but he had many strokes and they said stroke seven years ago first they thought it was bell palsy and they were wrong. Then four years ago they seen lesions on his brain and old lesions so they said he had a stroke years ago they misdiagnosed him with the palsy. He’s been going for an MRI every three months they’re going back-and-forth to doctors the neurologist they told him it looks like he has MS now than when we go back three months later they say they’re not sure then three months later they want to put him on some kind of injection thing but then three months later they say let’s not do it in case we were wrong because we have been to have symptoms of but it’s a possibility you don’t have it. So yes my husband is going through a lot he’s only 55 years old he works very hard he is in construction we’re going back next week to hear the same old thing blah blah blah. And this is a top doctor in Winthrop Hospital in Long Island New York also he’s working with the stroke doctor and they’re not sure if he has MS or not the spinal tap came back negative but that doesn’t necessarily mean he doesn’t have it not either you could be a false negative. Also my husband is going through a hard time walking he needs a half a knee replacement and one navy maybe in January he assisted his other knee so he struggling a lot he has to get up and go to work every day we don’t have a pensioner IRA we have nothinglike that I wish we did because he would retire in a couple years if he could but it doesn’t look like that could happen he would just have Social Security to live on his salary is a decent salary but if he can no longer work that will be a good thing he’s a hard worker and he doesn’t want to stop working like I said he has no pension we have no 401(k) so it gets frustrating for him but it also gets frustrating for me that we don’t have any of those things because I get worried about a future. So he’s going to try to worked many years as he can.he tells the docter neurologist he’s face gets numb A lot he feels he has been affected neurologically he goes to a lot of pop’s and downs emotionally. I worry about him and I pray for the best but I can help sometimes to think it’s not going to have a good outcome so the spouse also suffers along with the person suffering. But mentally my husband is very positive and he tries to stay strong for me and his two children that are in their 20s he doesn’t want to worry us he gets up he goes to work at 5 I am in the morning is a lot of responsibility on his job he’s a hard worker and I’m proud of his mental state to keep going and now his knee surgery it’s one thing after another. I’ve been with him for 27 years and love him very much I hope everybody on this site gets well and stay mentally strong and pray to God. He has a plan for each and everyone of us I am seven years younger than my husband I am 48. He used to work a lot of overtime if he could but now he can’t seem to do that as much. As far as our sex life their belly is an any and I understand due to his health issues and his stress and lesions on his brain and knee surgery I know he loves me so much and I understand that it does affect the man in that way and that’s not even an issue with me to be honest but I’m a young life I feel going through a lot also myself I’m just trying to always be positive and have patience. Sometimes I do get frustrated customer in the one you love is L they get frustrated they lose their patients and it’s not always easy on the spouse. But my husband truly loves me and does the best he can to work caught up to me and his children so I can give back by having patience and being there for him as I know he would be there for me and sickness. I pray for everyone of you on this site because it does affect you emotionally through you can cry for no reason you go through things it’s also an emotional thing besides physical. But I guess hell and my story now because I can keep talking. I hope I help someone out if they get frustrated not the only one we’re going back to the neurologist next week just to hear the same old blah blah not sure could be a mess don’t know what to tell you I know it’s frustrating my husband rather know just get a positive answer than not knowing but like I said he’s also going to other health problems. But I am going to talk to the doctor when we go in next week because I’m a little fed up and frustrated I’m going to tell him something has to be done here maybe we need to seek another opinion. God bless you all and know that life has a plan for each and everyone of us no matter what we’re going through God walks beside us even if we get frustrated and upset or feel why me some people just suffer more than others but God has a plan for everyone of us God bless

    • Rosebuds3luvs
      Rosebuds3luvs says:

      I’m still awaiting a confirmed diagnosis. I’m in the midst of a “flare”. I went from being very active, working a physically demanding job, caring for my 3 kids ..to being couch bound for 2 weeks, rushed to er twice with excruciating left flank pain. .. 2nd time they thought I was having a heart attack. I’m going to start a second round of oral steroids and I’m being scheduled for a spinal tap. Reading stories from others is a huge help in putting this all in perspective. I wish you all the best on this journey.

  5. Vickiana Hamilton
    Vickiana Hamilton says:

    I’ve been living with ms since the age of 16 ,32 now. Married 2 girls 3 &1 years old. Still trying to understand why God punished me this way. I lost my job apt and got in debt so much. I know nobody with ms. Been thru hell dealing with so much and depression😞 so many meds are driving me crazy. Can barely walk…its so much to bare. Thanks for this site…

    • Miranda
      Miranda says:

      Hi there I have recently been diagnosed an I also have little ones ,,, 3 two girls and a boy . I understand you and your pain and frustration u are not alone

    • Minerva
      Minerva says:

      Hi, I sit here as the fourth of july fireworks go off. My husband walked a few blocks with my fraternal twins that were finally ready to experience this. You are not alone. Not having endurance to walk or energy. We have a million things we can do. Continue…you can do this. You are not alone. Praying for you.

    • Stacey
      Stacey says:

      Vickiana, this is not a punishment from God. If this were a punishment from God, you wouldn’t have those beautiful little girls and your husband. I don’t know how many medications you’re on, but I can tell you from personal experience that once I got away from half of the medications, I was able to function better. Pills are definitely not a solution to every symptom MS throws at you. I’ve been where you’ve been Vickiana. I know how real the struggles are. I just want you to know that you’re not alone, and your family is blessed to have you in their lives.

      • Jana Morgan
        Jana Morgan says:

        I agree with Stacey and keep the medication to a minimum. Not much helps anyway. God? Now there is a big question but whatever makes you happy!

  6. Al
    Al says:

    Thank you Penelope, my daughter found this and sent it to my wife who has been diagnosed with MS about a year ago. This is the first article online that helped my wife feel like someone understands and that what she is experiencing is real. We’ve talked about this article a lot and she has all but four of the things you listed. One of the things she has that isn’t listed is a violent sneeze, mostly four in a row. She has RRMS and what our expert tells us she should go into remission, we are hoping he is right.

    • Penelope Conway
      Penelope Conway says:

      Al, I am so glad this helped. Wow…the sneezing must really be awful. Sounds painful too. I’m believing with you and your family that your wife will remain stable and her symptoms subside for a long, long, long time. xoxo

      • Karin
        Karin says:

        Hi Penelope, I need someone to talk to that understands and you seem to be the one.
        I am having a terrible time at present. Have many stresses. Moved house, have a bad bad cold that has made it almost impossible to walk. Have so much pain, all of the symptoms you mentioned except no trouble with vision. Not having relapses but slowly getting worse. Diagnosed in 2014 and was going ok except for the last 2 years. I am not depressed but do want this to end and often think of ways to end it.
        I hope this isn’t too upsetting for others to read about the progression of this awful disease. Not everyone will be like me. I have a supportive husband and two supportive adult children but I am looking into the future and can see that j will and already am a burden to them. I can’t come to terms with having this disease. Even after all these years I still can’t accept it.
        It is the fact that there is never any relief. That’s enough now.
        Thank you for listening.

      • Jana Morgan
        Jana Morgan says:

        Hi Karin, Don’t end it as not a good idea. My psyc said come to terms with it! She said I have to accept it! That doesn’t mean you have to like it. Could be worse! Yes really it could!!

  7. Melissa
    Melissa says:

    I’m a 20 year old diagnosed with RRMS & defiantly suffer from fatigue & hate the response I can get from people!
    When I say “I’m just tired” I normally get “but you’re so young!?”

    • Claire
      Claire says:

      I am a lot older than you but first started ms at 12. My kids sre grown up now. Single Mommy. It is sooo hard. I just want you to know how much I respect you for doing an Olympian task. Also list jobs over the years. There are a lot of us cheering for you.

  8. Mary Jane Alejo says:

    am a fililpino.and not fluent english.hindi na ako nagttrabaho.dahil mabilis akong mapagod.i take a midicine.pregabalen. tramadol.ptu deltiazem.sanokot.keltican and more.my doctor told for MRI but i cant affort.because am a single mom and hv a four kids.my eldest 17 yrs old and my younggist is 7 yrs old.minsan hindi ako maka lkad ng matulin. palagi nalang yong mga paa kong namamanhid kumukunikta s brain ko. hindi kaya ng utak otusan ang katawan kong gumalaw.naiiyak nalang ako.at halos palagi nalang nangyayari sa arw araw. and cry and cryd.sometimes i attemp suicide.i cant work.i cant eat wihtout taga subo ng pagkain sa bunganga ko.please help me what i did

  9. Yasmin Larkin says:

    Wow, I never knew half of these. It’s so good to know. I don’t personally have MS but I know people who do, this helps me to understand the struggles they go through.

  10. Tifanie Meis says:

    The hardest part is how my symptoms got so bad so quickly. Years of vague non consistent symptoms that they couldn’t diagnose and often accused me of being a hypochondriac, to trigminal neuralgia vision disruptions memory problems tremors…. And a very conclusive MRI.

    • MJR
      MJR says:

      I have Primary Progressive MS and it took me 32 years of being miss or un diagnosed before I was finally properly diagnosed with MS. I experienced the “hypochondriac” accusation too from incompetent doctors, so I can relate. I’m in my 50’s now, but early on in my MS when I was 21, I experience very debilitating MS fatigue and I also have fibromyalgia and my own Mom took me to court to have my 2 year old child taken from me because she thought I was being lazy asking her to watch him so much when I was so fatigued I couldn’t get out of bed to do anything or work to support us. Without an official MS diagnoses, you can’t get any financial help. There’s got to be a better way to diagnose MS early on so these things don’t happen and ruin people’s lives!

  11. stasha Flemming
    stasha Flemming says:

    I was diagnosed with ms in 2010 I could not walk for myself see properly or control my bowels most of the symptoms mentioned i do experience them it is not a nice thing to deal with but I live with it

  12. Glenda Weaver
    Glenda Weaver says:

    Have you ever touched an electrical fence. Have you ever held a hand sander the vibration. I understand intellectually the medical writers and physicians mean when they refer to MS, nerve damage or stroke related numbness and tingling as “only an annoyance,” not disabling, or a “benign” symptom. However, it is language like this that informs me that the writer has probably never experienced this symptom. Holding nothing against these people who are trying to help us, I’ll say that for myself, the itching, burning, vibration and tingling was a minor form of physical and emotional torture. The time I felt the most alienated from a neurologist was when he responded to my question concerning how long would it last and what could I do to make it stop with a smile and a shrug.

    These days I have consistent bus Symptoms starting early morning I woke up and stiffness, vibrations throughout my body cold surges into both hands, i layer by layer with many clothes, warming up with hot tea or sometimes cold cold water I shower with hot hot water than a blast with cold seems to calm the left side down. The buzzing will calm down so I can least concentrate for at least 5 hours then it comes on within a vengeance if i overworked my left arm “movement” seems to irritate my shoulder on the left side of burning, tightens up, feels inflamed, prickly sensation along my collarbone, my left arm goes numb, tingles, hurts it’s like having a “stroke” symptoms. My body gets really cold on the left side as a feeling of ice cooling to numb the skin but deep deep inside hurts !

    Before my accident on June 2013 have a strong athletic I hiked 20 miles weekly swimming like I act like a noose around the ridge run in 2012 a snow trip I’m a hair designer that works 6 to 10 hour days i’ma clean later no drugs I take natural supplements I ask what happened what is happening to my body.

    Even walking can bring on the burning, tingling sensation in my shoulder and my cat acts like there is a pressure cuff wrapped around my calf “presure squeeze ” my hips burning then the buzzing starts up my spine with a painful burn down my inner left leg to my knee which swells up feels like I have a heavy weight on my left leg. The symptom feels like my right side is holding up my left when the left flares it sends a buzzing sensation up my spine to my neck then Titans and the pain burning in my shoulder down my arm sometimes just my left hand gets so cold it turns white surges in my intestines “vibrations” which my bowel has slowed down from twice a day to maybe every 8 to 9 days. My lower half of spasm, burn and very sensitive to touch cold sensations go up my spine if you brush your hand across my lower hips. First thing in the early rise 6 am morning feels like I have no control over my hips and legs. Once moving they seem to balance out yet feeling very heavy I’m very slow. Sometimes I feel like I want to throw up. My chest bone feels like a cube of ice right in the center very cold it hurts! Drinking warm tea or a warm shower sometimes helps. How many showers do I need to take a day least 3 to 5 , starting with very hot water that’s blasting on the top of my head to warm me up then I turn it to very cold to cool me down seems to stop the surges and the buzzing on the left side. Afternoon comes around about to so exhausted I need to lay down and I pass out. I wake up burning so I shower and drink something cold seems to help.

    The buzzing is still with me and there are times that I can tilt my head a certain way and it will calm down more vibration then or sometimes it gets louder the buzzing. .. my hearing is out of this world I’m sensitive to noise I can hear conversations for tables over while eating dinner, let’s just say this is so emotionally exhausting.

    Being an open minded strong willed I have found my team that believes in helping me , I work with a D.C.,QNCP quatum therapist with acupressure, craniosacral therapy is a miracle after my accident I felt tilted | ungrounded | off center for a long time, physically and emotionally exhausting .. I’m so thankful for my team on their approach that got to the core of what was wrong.. I believe in holistic healing, eating clean, and digging deep planting my roots into the ground and not giving up.. being an athlete , and loving the outdoors kept my positive attitude to strive to overcome whatever is misfiring.. I have not been diagnosed with Ms as the symptoms so relate, because of the complexity of my medical issues and being so healthy coming into this my blood findings come up with ASIA. .

    AND THE STORY BEGINS. .

    Being positive with balance is the key..

    Reading each and everyones notes let’s me know I’m not alone. I’m so glad I found this article it has brought a smile of hope♡

  13. Beth
    Beth says:

    I was diag. A yr. Ago after 3-4 yrs of tests & 4 neurologists later…I have been on 3 x wk. Injections since last April. I do not have any lesions in spine or head…my MRIs looke like smoke in thorasic area. Anyone else out there have this???? I truely believe i contacted this from the Lymes Disease I had 9 months before the symptoms started…The numb feet/legs/fingers/hands / unsteady balance… this post is what I feel daily..mostly. Yet I am not depressed, just pissed as I cannot do the things I like…like walk all over. I loved walking! I still work full time & will continue to keep going, but some days are tough, thank God I work with a great bunch of people. After 3-4 yrs. Of not knowing… The diag. Was almost a relief. I make jokes about myself..it helps. Anyone ?

  14. Allison Schmitt
    Allison Schmitt says:

    Am I seeing things, or is it the MS? This morning when I read your blog, I swear you had a different post regarding how MS feels because I remember, I think, reading about loud noises bothering us, not liking to be in a crowd and the best one was feeling like u have saran wrap over your eyes some days. I can’t find that post. Or did I just think I did??? Does anyone else remember seeing that one?

    I was DX June 24, 2011 (Birthday gift for my husband. His bday is June 25) with my legs going numb. They found it was MS right away. My neuro said I will start with injections and go into remission then maybe some relapses. Well, I skipped that part and went straight to progressing quickly. I’m now classified as Progressive Relapsing in which just 5% of all MS patients have this kind. I’m certainly not proud or bragging that I have the rare kind, it just plain sucks. I have been told there is no MS treatment for my type of the disease so I’m not on anything but other meds to help with symptoms. Nothing to hopefully prevent relapses. I have never ever had a remission period so I’m envious of those of you who do and thrilled if you do get a remission period. I read ur emails, I’m not on Facebook, you are so positive and I have yet to find any enjoyment in my life or smile or laugh for the last 5 years. Idk how you all do it so please help me find that happy place. I was also DX with REM sleep apnea and Fibromyalgia all at the same time. Yes, I am struggling to smile. I have very little help or support so that frustrates me. The few people left in my life wonder why I don’t talk to them for awhile. Well everyday is a living hell so I guess I don’t feel good enough to talk or text.
    Well, this is the first time I’ve completely vented about this MS BS! Feels good to get it off my chest. Been to 3 Neuros and not comfortable with any of them. Family doctor is very compassionate. Now Drug plan is questioning why I use certain meds that I’ve used for 5 years. WTH? Seems like such a big job to deal with all that too. I could probably go on for several pages but I know u have all heard it all. I just want to find that smile that some of u have found. Thank you all for listening, guess I needed a good vent. I love reading all ur comments too

  15. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    What a good revelation for someone with MS Penelope. Here are a couple of thoughts of mine.
    Fatigue: It’s like a car with an almost flat battery and won’t go but the radio will. We have a ‘radio’ that still works but other parts don’t and that drains more from us.
    Walking Difficulties: Although it may look like being drunk it isn’t the same (thank God). We had a choice when we got drunk, Now we don’t and that is a big problem.
    Spasticity: A good sleep deprivation and makes for an interesting bed partner.
    As for most of others I have mainly got a very numb body which is a blessing for some things, it is quite annoying for other things (like sex and having fun). It is frustrating to have someone trying to tickle you and nothing happens. It’s really like being ‘Sitting Comfortingly Numb (as Pink Floyd put it)
    Any way I’m still alive and that wont take it away!

  16. Ray McCallion says:

    I know there are going to be People who say, I know how You
    feel. That, In My Eyes would be absurd. They can’t possibly know unless They have experienced it. I admire You all & You have My
    sympathy.

    • Kerri
      Kerri says:

      Hi Christin I just read your post and it touched me. Also so many other posts touch me. Be strong and try to have a good attitude and have faith Lord gives us things that we can handle whether we know it or not. I just want to tell you a little bit about actually my husband situation but since were married it became my situation to because as he suffers I suffer along with him. He’s been diagnosed it’s a long story so I don’t know how long I’m going to make this but he had many strokes and they said stroke seven years ago first they thought it was bell palsy and they were wrong. Then four years ago they seen lesions on his brain and old lesions so they said he had a stroke years ago they misdiagnosed him with the palsy. He’s been going for an MRI every three months they’re going back-and-forth to doctors the neurologist they told him it looks like he has MS now than when we go back three months later they say they’re not sure then three months later they want to put him on some kind of injection thing but then three months later they say let’s not do it in case we were wrong because we have been to have symptoms of but it’s a possibility you don’t have it. So yes my husband is going through a lot he’s only 55 years old he works very hard he is in construction we’re going back next week to hear the same old thing blah blah blah. And this is a top doctor in Winthrop Hospital in Long Island New York also he’s working with the stroke doctor and they’re not sure if he has MS or not the spinal tap came back negative but that doesn’t necessarily mean he doesn’t have it not either you could be a false negative. Also my husband is going through a hard time walking he needs a half a knee replacement and one navy maybe in January he assisted his other knee so he struggling a lot he has to get up and go to work every day we don’t have a pensioner IRA we have nothinglike that I wish we did because he would retire in a couple years if he could but it doesn’t look like that could happen he would just have Social Security to live on his salary is a decent salary but if he can no longer work that will be a good thing he’s a hard worker and he doesn’t want to stop working like I said he has no pension we have no 401(k) so it gets frustrating for him but it also gets frustrating for me that we don’t have any of those things because I get worried about a future. So he’s going to try to worked many years as he can.he tells the docter neurologist he’s face gets numb A lot he feels he has been affected neurologically he goes to a lot of pop’s and downs emotionally. I worry about him and I pray for the best but I can help sometimes to think it’s not going to have a good outcome so the spouse also suffers along with the person suffering. But mentally my husband is very positive and he tries to stay strong for me and his two children that are in their 20s he doesn’t want to worry us he gets up he goes to work at 5 I am in the morning is a lot of responsibility on his job he’s a hard worker and I’m proud of his mental state to keep going and now his knee surgery it’s one thing after another. I’ve been with him for 27 years and love him very much I hope everybody on this site gets well and stay mentally strong and pray to God. He has a plan for each and everyone of us I am seven years younger than my husband I am 48. He used to work a lot of overtime if he could but now he can’t seem to do that as much. As far as our sex life their belly is an any and I understand due to his health issues and his stress and lesions on his brain and knee surgery I know he loves me so much and I understand that it does affect the man in that way and that’s not even an issue with me to be honest but I’m a young life I feel going through a lot also myself I’m just trying to always be positive and have patience. Sometimes I do get frustrated customer in the one you love is L they get frustrated they lose their patients and it’s not always easy on the spouse. But my husband truly loves me and does the best he can to work caught up to me and his children so I can give back by having patience and being there for him as I know he would be there for me and sickness. I pray for everyone of you on this site because it does affect you emotionally through you can cry for no reason you go through things it’s also an emotional thing besides physical. But I guess hell and my story now because I can keep talking. I hope I help someone out if they get frustrated not the only one we’re going back to the neurologist next week just to hear the same old blah blah not sure could be a mess don’t know what to tell you I know it’s frustrating my husband rather know just get a positive answer than not knowing but like I said he’s also going to other health problems. But I am going to talk to the doctor when we go in next week because I’m a little fed up and frustrated I’m going to tell him something has to be done here maybe we need to seek another opinion. God bless you all and know that life has a plan for each and everyone of us no matter what we’re going through God walks beside us even if we get frustrated and upset or feel why me some people just suffer more than others but God has a plan for everyone of us God bless

  17. Christine Ping says:

    Told I had a trapped nerve in my back for 21/2 years. Saw general consultant for another 2 years did all his tests couldn’t find anything. Referred to neurologist who did MRI of my head spinal tap nerve conductivity tests. Told after 12 months I had MS.

    • Lou
      Lou says:

      I was diagnosed 6 years ago with ms the 21 years before I was told I suffering migraines me and even chrones not to mention a few other things wasn’t till my sight went and legs decided they didn’t want to be part of everyday life anymore I had an mri there were all my lesions on my spine as well for the world to see ui don’t take meds .make me worse but I do use marijuana it works for me so well

  18. Angie Kinsella says:

    Only been diagnosed 6months, the only symptom from that list I have is visual probs. Had ON last May which led to the MS diagnosis!!! Not looking forward to getting all the other symptoms

    • Lisa Hart-Leverton says:

      You probably won’t get all the symptoms Angie. Hopefully you will be symptom free for many years to come. The neurologist that diagnosed me 13 years ago (after many years of odd things happening that I ignored because they got better or I coped better?) He told me to go live everyday of the rest of my life and I try to do that. Sound advice I think 🙂

    • Carolyn Pedersen Howard says:

      It will Angie! Took me a few years not to let it consume me…… I think we all grieve when were first diagnosed. Losing control over your health and not knowing what tomorrow will bring is pretty hard to come to terms with…….but you will girl!! I LIVE the good days and the not so good days ….I know what I have ( and everyone has something) but it’s not going to kill me😜

    • Angie Kinsella says:

      I’m so used to being the carer in my family (have 2 children with Autism, partner has crohyns disease, mother has cancer and heamocromotis, I mind my nieces n nephews) I just can’t get my head around the fact I won’t b able to care for them soon 😰

    • Amineh Constantine says:

      Angie… I have been diagnosed with MS. In 2001… It was a rough start but got thru it…. My best advice to you is to study the illness itself and then you will know what u need to do to control it instead of the MS controlling u…for instance I changed my diet completely to follow the MS diet… Took the vitamins needed…Decrease stress…exercise… and of course kept smiling 😄That was a life saver for me… When diagnosed I was told I will be in wheelchair in 5 years& 15 years later & im still walking/running like a teenager…I hope this helps u… Stay strong

      • Kim
        Kim says:

        What’s the MS diet? This is first I’ve heard, but makes sense if certain foods aren’t good for us.

    • Pixie Boris says:

      I’m working on my 17th year this April . Mine also started with vision problems.
      Optic neuritis.
      My advice: get as healthy as possible. Diet and exercise.
      Manage stress situations. And don’t be ashamed/afraid to ask for help.
      Some days are very unpleasant, then you’ll bounce back. This disease definitely is about give and take. You can do this! 😁

    • Matt Kuhn
      Matt Kuhn says:

      Angie, look into HSCT and if you choose to have it done you might not have any of these symptoms. I had treatment done at Northwestern Hospital in Chicago 2 years ago (after being diagnosed for 3 years) and while some of my existing symptoms haven’t gone away I haven’t developed any new symptoms and I haven’t had an active lesion since treatment either ( I usually had 20-30 lesions at any given time). You also wouldn’t need to take any ‘traditionally’ DMD.(disease modifying drug) anymore. If you have any questions about this you’re more than welcome to PM me (anyone who is interested can message me) and I can’t point you to a Facebook group of people who’ve had it done or want to have it done or are just interested in learning more and you can see if it’s something you’re interested in. Good luck with your MS journey.

      • Bianca
        Bianca says:

        Hi Matt. I had HSCT a year ago so could you please direct me to the facebook site as I cant seem to find it. Thank you
        Bianca

  19. Dorethea Harrison says:

    I love this article. It speaks to the core of our ms symptoms! I can relate to about 95% of the symptoms listed. This is a great article to share with family and friends.

  20. Melinda Reich says:

    I have a question. How does your Dr. Figure out you have MS?? I have pretty much every symptom. But my pain Dr. Doesn’t seem to care about the things I have to say. I know I’m not the only one in here… And I trust you guys in here. Thanks!!! I hope everyone has a low pain day… And can enjoy their day!!! Xoxo

    • Positive Living with MS - Multiple Sclerosis says:

      Set up an appointment with a Neurologist. If MS is suspected, they will do MRIs to see if any lesions show up on the scans and then a spinal tap to look for potential abnormalities there as well. There are numerous diseases that mimic MS, so it’s a process of sorting through other possibilities of symptom causes to get to the bottom of what’s going on.

    • Melinda Reich says:

      Thank you… I just had an MRI so I’m pretty sure they won’t pay for another one, because they won’t pay for a ct scan unless I get an injection. And I don’t want one!!! I have every symptom other than the vertigo. I loved this article!!! And gave me a good laugh!! Thank you!!!

    • Julia LaMear says:

      Hello Melinda Reich, I’ve been dealing with all my symptoms since 2009 (numbness, tingling in both hands & feet, vertigo, off balance, pain in both legs, wobbly feeling off and on, blurred vision) had many MRI’S of the brain and back. But no lesions appear. Finally though after moving back to Michigan a neurologist specialist diagnosed me with Sciatica and Progressive Neuropathy! So please keep going to get an answer fir yourself. God Bless!

    • Melinda Reich says:

      Thank you Julia LaMear…. Yes I have all of that. I’m in the process of finding a different neurologist because no one is listening!! All they want to do is another neck surgery. I’m tired!! And Julia I know you know what I mean. Thank you and many blessings to you!!!

    • Stacy Novrit Brown says:

      See a different doctor like a neurologist. If you can find one who just deals with MS even better. Took me about 6 months to verify i had MS after 3 MRI’s, blood work, EMG, and a spinal tap to confirm i had MS. Don’t put it off! It may be a while to get the dx. Be patient! Good luck!

    • Pamela Reed says:

      I went to an MS Center (in St. Louis, MO). They thoroughly explained what needed to be ruled out prior to making an MS diagnosis. I started with blood work to rule out low levels of B vitamins (which can mimic some symptoms). Then, I had a carotid doppler and an echo-cardiogram with saline to rule out a hole in the heart and strokes. Then, I had an MRI of the head and spine. All tests were fine except for the MRI, which showed lesions in the brain and spinal cord. No spinal tap was needed. Diagnosis was made.

    • Karen Ryan Larder says:

      You could have vasculitus which is caused by Chylamidia Pnemonia bacteria! I am in Australia so don’t know about the US but here there is only one laboratory that does the test properly! The other test is an ultrasound of the veins in your neck to see what the blood flow is! You would need to see a vein specialist! Good luck!

    • Melinda Reich says:

      Karen Ryan Larder… Thank you but I was just at the gyno I don’t have Chlamydia..but thank you!! And everyone else thank you very much. Its cold now here in PA so its a bed day. I hope everyone is having no pain or low pain… Blessings!!! 😍😍😍

  21. Julie Martin says:

    When I am asked how I am all of that flashes through my mind as I reply ‘oh just the usual’. Because lets face it the list is long and tiresome.

  22. Brandie Wheeler says:

    Plz let ppl see what my 11 year old wrote Tomorrow will be the first day ms (multiple sclerosis) awareness month. My mom has ms. She has had it or over 4 years (i believe).It has a affected my life and hers too. On May 7th there will be an ms walk. I will be going to support not only my mom but my cousin as well. Brandie Wheeler and Kimberly Fish, you guys are too of the most important people in my life. I love you both! please send prayers for my family1

    I would also like to say that my Grandmother Rebecca, had ms. not all of the kids got to see her. I was one of them. I would want her to know that i love her and hope she has a great month up above us!

  23. June
    June says:

    I don’t have MS but some years ago after getting numb feet and bum, and electric shocks ( felt like ) in my legs, was advised I had transverse myelitis. Is L’Hermittes Sign ( the shock-like feeling ) another MS symptom? My problems couldn’t be called MS because it was a singular episode. I am left with a small problem with balance only and feel very very lucky. I am filled with admiration for all of you sufferers, and the writer of this excellent article , and I fervently hope I never join your club.

  24. Desarai Gazaille
    Desarai Gazaille says:

    I’m 19 a nineteen year old full time college student and part time waitress that just got diagnosed with ms. I’ve stayed away from the internet until now. Once I found this article I fell inlove. People don’t understand or even believe when these things happen out of no where not to mention how hard it is to explain to other teenagers without people just showing sympothy. I’m so happy I found this site! I already laugh at my struggle because there’s nothing else I can do. Thank you for sharing, it’s much appreciated!!!!

  25. jason
    jason says:

    This is excellent. …. I was diagnosed with ms on the 12th of February this year and at the moment are really struggling until they find my right medication. ..this is a great post cause it can tell my family what I am going through. At the moment it’s hard to be positive but hopefully I’ll get there..

  26. Doug Wineburner
    Doug Wineburner says:

    I was diagnosed in 2007 with both ms and myasthenia gravis disease. I at first had no idea I had ms I got up went to work was walking my legs went weak knees buckled in and I fell at work
    after going to dr he did blood test then full mri and said I had lesions on my brain and had ms. then after going to ms dr he discovered I had both diseases but said was rare for someone to get both ms and mg. he even sent me to Chicago Illinois to have ms specialist there check me out and do test. after they did them they said yes I had both diseases. I am on disability live with dad and brother I lost mom this year in april that was with me also… I also lived with epilepsy since I was 4 had brain surgery for it when I was 21 and have osteoporosis. I can no longer walk been in my powerchair a few years I still fall at times like when trying to stand to get pants up or transfer to stool etc.

  27. Tammy
    Tammy says:

    I just have to ask on fatigue for me I feel fatigue n sleep r separate because I can get so fatigued like you described but not sleep for days. So my body is done I can’t move like I hicked 100 miles but not fall asleep does this happen to others. But some days I do fall asleep as u described. So I have to separate sleep n fatigue

  28. Leonor
    Leonor says:

    Double vision and numbness were the first symptoms that lead to the diagnosis. Steroids treatment for the numbness along with the diagnosis was hard, and still is because I fell crap after taking my Avonex injection, struggling with the side effects.

  29. Gregory Weberg
    Gregory Weberg says:

    My best friend has MS. I have stood by his side for 10 years. I have been there whenever he’s had his attacks. Even at his wedding, when the heat triggered his MS. I was his best man, and had to hold him up, while we got him a chair and water. I was his shadow the rest of the day, never let him go anywhere alone. I have seen some bad times, and helped him through it. I support you all, you are all warriors.

  30. Jade
    Jade says:

    Multiple Sclerosis – In a word HORRENDOUS! When it’s good, NO PAIN, no shaking… When it’s bad omg, falling both upstairs and down!! :-(( I really REALLY hope the wonderful scientists find a cure for this disease! :-((

  31. Jan Vining
    Jan Vining says:

    This is such a great description of what life with MS is really like. Wish medics would read and take on board.

  32. David
    David says:

    Thankyou for taking me down memory lane, of everyday life with MS not just the bad days of which there were many but the good times as well it brought Vicki and I closer together. So I shared MS life for 28 years with my wife, MS is still in my life with MSers on twitter also my work with a neurology group curtsey of local CCG & hospital keeping up the fight against MS.

  33. Steve Carrigan
    Steve Carrigan says:

    Very good, accurate article. People without MS have little to no idea what symptoms we really suffer with every day. I have no idea what going thru cancer treatments are like and don’t pretend to know. I wish people would not judge what an MS sufferer goes thru with each step they take. It can be a bit daunting. Thank You for this article and spread the word.

  34. Susan
    Susan says:

    Luckily I haven’t experienced all of what’s written about . But what i experience and have experienced was right on. I love this article ! The writer of this article added humor to what MS does to me. I’d like to talk about how MS makes me feel without making you get sad and this article does this for me. It lets you experience what I do by example . It was yeah that’s what it feels like,as I read each paragraph. It also gave me insight to what I personally don’t experience. My daughter sent me this article this morning and I’m glad she did

  35. Jane
    Jane says:

    Heat intolerance is the worst, AC is by far the very best for me! Love my pool, can walk and even run in the water…to bad I have to get out! Bowel problems are the absolute worst thing for me right now as well as low back pain in right butt cheek and hip. Any suggestions for the knotted muscles in low back and butt would be greatly appreciated. I certainly keep my chiropractor on his toes, always has his thinking cap on because this disease is quite the challenge. I was diagnosed at 26 years old with optic neuritis, no symptom ms or medications , not so much as a headache, 26 years later, when menopause was coming into play, WHAMO! Here we all are, first time I have seen all of your posts, really enjoyed all of your comments and cheery writings! Thank you

    • Linda
      Linda says:

      Jane, I hear you! I’ve had MS for over 20 years, but it wasn’t until menopause hit that things got really bad. The hot flashes are the worst for the heat intolerance. They are starting to subside after 6 years, but we’ve been having increasingly warmer summers (and winters) where I live, so that doesn’t help with the heat intolerance.

  36. William
    William says:

    Mostly pretty spot on. Was diagnosed in 2000 with RRMS which jumped to PPMS then it got worse within a few years though I have traced my general symptoms back to ~199* but was tolerable then. I am 38, single and apart from my MS I find finding someone to also be a trial-by-fire.

    • Diane
      Diane says:

      Same here William, I try to stay focused on God and hang on to his promise that he will send my life partner in his time. I do believe that the loneliness contributes to worsening symptoms. God’s speed to you! I look forward to having true love somewhere/time in the not so distant future.

  37. Jorge
    Jorge says:

    Except for the swallowing problems and dizziness/vertigo I’ve got them all. Thanks for th simple description of them.

  38. beth
    beth says:

    By far probanly the best description of MS Iv ever read. This is definitely a keeper. Thank you. It will be my go to for any questions and even stupid ones. And there are a few when it comes to MS.

  39. Sean Farrell
    Sean Farrell says:

    Huge respect your way for writting this i have MS and my life has changed somewhat but i also think we adapt and overcome i run a group on Facebook called Bikers With MS (FUMS) and it is full of us that ride and pillion 2 or 3 wheels and keep fighting the MS and the world wwe find ourselves in, yes our lives changed but it will not beat us down , thanks for the above will point everyone here as it was shared to me by a fellow MS’er who i hold dearly a friend hope your all having a great day

  40. Sunet van Niekerk
    Sunet van Niekerk says:

    I live in South Africa and really learn a lot from your posts. You all seem to be on a more informed level about the disease than I am – but also, I have only been diagnosed in September 2014. How can I post my story and thoughts (similar to a blog) to your page?

  41. Mary Jo Duffy
    Mary Jo Duffy says:

    Every single thing said in this blog describes my life to a T. I have believed I have MS for years but my doctors just look at me like I’m nuts. What do I have to do to get a doctor to take notice?

  42. Katie Peterson
    Katie Peterson says:

    My official diagnosis is atypical demyelinating disorder. I have only one lesion in my brain and got to see images of it after the three hour MRI, which I fell asleep in. . Lol. I have many of the symptoms described in this article and am grateful you put into words exactly what it’s like to live with these symptoms every day. Fatigue is my most difficult symptom to deal with, I experience it very often and I have two little ones, I can’t doze off when I am the only adult caring for them at times. I am so lucky to have my mother to help me, I don’t know what I would do without her. I have muscle spasms, numbness and nerve pain, painful joints and all over my body, bladder problems, unsteady gate at times, cognitive and mood issues, vision problems, and the MS “hug”. I have been having symptoms for a long time and feel like I have a good attitude about it at least, Lol. In the future I will have a diagnosis of MS and I am ok with that. I already have been diagnosed with endometriosis, poly cystic ovarian syndrome, plantar facitis, and have chronic low back pain from doing CNA work in nursing homes for years. I am only 30 years old but am making the best of life because if you let the depression get the best of you you are only making it harder on yourself. Thank you again for expressing in words exactly how I live my life too. 🙂

  43. Stephanie. Jordan
    Stephanie. Jordan says:

    That was true awesomeness!! In 16 years I dont believe I’ve heard anyone(myself included) come so appropriately close to describing our interesting selves! Im certainly gobba share and thank you!

  44. Mel Curran
    Mel Curran says:

    I find that the cold weather really hits me hard!! I’m always in so much pain and I suffer really badly with fatigue so I usually sleep through most of the winter months!! I hate not being able to do the things with my son that I could do before!! But when the warmer weather kicks in again I can start to feel free again!! Unfortunately the pain is always there and it gets me down but then my son will smile and tells me he loves me and that’s enough to snap me out of it!!

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