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.

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  1. Michele
    Michele says:

    I have been struggling with this for 3 years and diagnosed for 1. I had just ran a marathon the month before my first episode…so, as an active and athletic person it hit me very hard. I try so hard to have a good attitude and appreciate the “better” days (as I haven’t had any symptom free days) and not think about what the future holds, but some days it is hard. I am determined to live on my terms and not let it defeat me and have a “can do” attitude…just not completely there yet. It is a frustrating adjustment trying to find my new normal…but I hold on, knowing that some day I will! I appreciate reading these articles and the comments because it is very hard for me to reach out to others about what I go through and how I feel, and reading others is a comfort to me and gives me strength!

  2. Kelly
    Kelly says:

    Yes! I have MS an have ALL of these symptoms and more. I am going to share this every day. Maybe then my friends and family might understand a fraction of how hard it is to live with this ¢€^℅®© disease.

  3. Sam M says:

    Just new to ur facebook as well newly diagnosed…. this is by far my fav outta the blogs iv read so far… hope u dont mind the share… thanks gor the awesome read 🙂

  4. June
    June says:

    Great article! My mother has MS, I thought I knew what she goes through every day but it appears I don’t. I hide in a bubble and pretend it’s not there, it hurts to know I can’t “fix” it. Too see how people look and stare at her like she’s a side show act makes me want too scream. It’s so hard to watch someone you love suffer.

  5. Deborah
    Deborah says:

    Penelope, you’ve got me chuckling! Very clever writing….. I’d really like to hear your take on our heat issues! Living in So. California can be a real bear at times and this is one of my and maybe your biggest issues during the summer! 😉

  6. Bryna
    Bryna says:

    I really appreciate your vivid explanation of what we are dealing with on a regular basis. I am desperate for relief from my chronic pain and fatigue. I am unable to receive medical treatment at this time due to the Medicaid/Medicare gap in Florida. Praying that I will be able to find a way to decrease the severity of my symptoms and depression. I am willing to try anything at this point. Please feel free to comment if what you are doing is working. My children and I thank you for your support. God bless you and yours

    • Mary
      Mary says:

      After having to give up working i lost my health insurance. My husband and daughter worked with the manufacturer of the medication i take to get fininacial help. Never have i been out of my meds. I thank God for my family and the pharmaceutical manufacturing company. Try asking for the same help. Good luck

  7. Sharon Lee Ferris says:

    TRUE SAD I HAVE ALL THESE EXCEPT BOWEL PROMBLEMS I HAVE TO SELF CATH BECAUSE OF THE SPASMS IT SUCKS AND I LIKE WHEN I GO TO GET MY BOTOX IN THE MUSCLES IN MY HIPS AND THEY SAY ON A SCALE OF ONE TO 10 WHAT IS YOUR PAIN LEAVEL I WANT TO SAY 20 BUT I SAY 10 AND THEY LOOK AT YOU LIKE WHAT HOW CAN YOU BE CLAM WILL AFTER 14 YRS I JUST TRY TOO BLOCK IT OUT BUT US MSERS KNOW WE JUST GO ON

  8. kat
    kat says:

    I had my first episode with Ms when I was 28 years old. Scared me half to death. I am blessed in that I had very few problems until I turned 40 when I was finally diagnosed. I do however have most of the symptoms shown above. I worked full time until I was hospitalized and diagnosed in 1998. I hate it when people say “but you look so good” because inside I don’t look so good. However I do have some pretty powerful backup in my Lord & Savior Jesus Christ. Without Him & my family I would really be a mess. I’m 57 now and still walking so I really can’t complain too much. Yea there’s things I can no longer do like belly dance but I am thankful I can still do the things I can do. It’s a matter of keeping the faith & just soldier on.

  9. EJ
    EJ says:

    I was diagnosed RRMS on 12/16/2013

    I am still struggling to accept I haver this horrifying disease as well as trying to learn to live with the symptoms you listed. I experience terrible exhaustion, heat and cold intolerance, lack of thermal regulation, vision issues (left eye only so far) and cognitive issues. I am a professional writer (comics and entertainment) and my work has nose dived due to the cognitive issues. I also have had to move back in with parents who are horrid in either (a) understanding what MS does to a person and what we live with and (b) horrifying slobs who keep their house in the most disgusting and garbage dump like condition. I am honestly losing my spirit, my spark.

    MS is an evil and horrible disease that strips the one stricken of everything that was them.

    • kellie
      kellie says:

      So sorry you are going through this. I too have MS and fortunately my husband is wonderful but I worry too what if my condition worsens and I become a burden to him and ruin his life. I too would like my house to be neat and tidy but because my husband travels for work my 21 year old son moved in to help me. Well he makes messes. But I am blessed to have these two men in my life and thank God for them. I know that it is hard for them to see me go through this. I am grieving for my old self. But at the same time I am trying to not let MS define me or win.

  10. Cecile Bulva
    Cecile Bulva says:

    Jen-I hate that you are going through this! So proud of how well you handle these symptoms and continue on with your life! I remember your statement that defined you as the beautiful and loving person that you are” I have to live with MS but it will not take over my life” your attitude and perseverance are amazing! Love Mom

  11. Virginia
    Virginia says:

    I have MS too. I get all these things happening also and I hate it . It’s been especially hard the lAst few years. The hardest part is all the meds . Depression and not enjoying sex like I used too. The feeling that I am stealing my husbands joy. . He is wonderful and is in love with me as if I was a supper model! Thank Hod for him. But I have always been the family rock. I feel thati let them down. . But I still love me and have no shame in my game. I still havei much to give. ! Love my family and love my God. Faith is a gray source of strength . Don’t give up . Life is worth fighting for. If I had given up when I felt it was more than I deserved or wanted to deal with I may have missed the last 20 years of my life. By the way MS is horrible but death is a million times worse. Keep fighting . God bless us all.

  12. Liz Dunbar says:

    Wonderful blog, with a terrific sense of humor. You capture the many and varied aspects of our condition perfectly. A superb post to share insight into our issues with people who don’t have MS. <3

  13. Debbie
    Debbie says:

    My friend Denise has MS & she is simply an amazing person, true fighter. I admire all you sufferers, having to live with it. Nobody knows what it is like, struggles of every day to day life. Life is so cruel & I send my love to each & everyone of you. As my friend says if only each person has it for one day then they will understand what you all go through. I sometimes go to MS centre in Canterbury & what an amazing group of people they are. They make you so welcome & never moan about there illness x

  14. Caroline Trimble says:

    Excellent described perfectly, I have intolerances to cold and too hot and I hate being in big crowds or having to make plans to do things in the future I can’t sleep for nights before hand maybe that’s just me lol x

  15. steve
    steve says:

    hi, way back in 1992 when I was 37 it was over about 3 nights I went from being very fit with a hard job to my weakest .. I still tell everyone after 21 years that I’m in denial and in a way I am a bit because any stress knocks me down quick so I try not to think about my 24/7 pain and how bad this can possibly get .. blindness is my big worry .. this year I bought a 4 wheel walker and am used to the looks and being seen with it now .. it’s a big change from driveing big trucks and my Harley and that’s another sad part for me but I can still drive an auotmatic car thank heavens … I dont look like if there is one a sick person but beieve me if I could click my fingers and transfer all my pain into you now you would drop to the floor and be stuck there unable to get up .. it’s taken me years to learn to lock my knees to walk and look this normal.. I do ramble on dont I lol cheers everyone

  16. Kathryn Hanson says:

    Thanks so much for sharing this. I didn’t know about the breathing issues and per my primary care doc, spent yesterday at the ER ruling out heart issues or a pulmonary embolism.

  17. Danny
    Danny says:

    I have MS, but, it ain’t got me. Yet! I love it when people tell me “But, you look so good.” I like to tell them “I have always looked good. I just don’t feel so pretty good all the time.” But, it ain’t no big deal. My ticket is punched and my bags are all packed. I’m ready when He is. Till then, though, I’m gonna do all I can and cause as much trouble as is possible. I still play golf and mostly I am happy as a hog in slop. Stay positive, folks. It gets better farther up!!!!!!!!!

    • Petra Coetzee
      Petra Coetzee says:

      Amen and I always like to give the credit to Him if x thinks I look great, even though we don’t feel that way. At least through His grace I seem great to someone who is a bit ignorant of ms and I believe He will use me with my ms as an example to x to be great full in live 🙂

  18. Alan
    Alan says:

    To my wife who has MS I love you xxx To anyone reading this that has MS or for anyone who is a carer for someone with MS don’t be alone, ask for support.

  19. Elizabeth
    Elizabeth says:

    I have all these symptoms and I don’t have MS. I have a degenerative, progressive neurological disease caused by a fault in the mitochondrial cells. It has taken 13 years of MS misdiagnoses and 20 years of other misdiagnoses of other diseases for a smart neurologist to finally come to this diagnosis. So, all of you who have all these symptoms and more, with no sign of lesions on MRI’s, and oligo-clonal bands in the blood serum as well as the spinal fluid, take heart. There are answers. You just have to find a doctor who won’t brush you off. It has been a crazy ride, and crazy is the key word….I have felt crazy all this time with more visits to shrinks than I care to count, to finally have a diagnosis. It is a real downer to know that there is nothing they can do but treat the symptoms, science hasn’t come far enough yet, but at least if it crops up in future generations, (it is genetic) they won’t have to go through the crap I have had to.

  20. Shanna Kinser
    Shanna Kinser says:

    Oh my goodness. Thank you for putting all of this in words that I can share with family and friends. Only three cousins whose mother had MS too really understand in a meaningful way what my life’s like. Just one trip to a zoo several months ago proved that. They had me set the pace, we stopped for frequent rest breaks, and when I “hit the wall”, we found a place for me to rest and take take my meds while they finished up their visit to the reptile house. Next was a well-air conditioned restaurant where could take my time eating some soothing soup. Then back to my room for a long nap. What a precious day to be with family who flawlessly understood.

    • Petra Coetzee
      Petra Coetzee says:

      Thank God, Almighty for the people in our lives that love us, stick with us through the up’s and down’s.

  21. jude
    jude says:

    I have MS….wish I didn’t, but I can say, that things could be worse….I am still walking, and that is a good thing. I can still read, and that is a very good thing! I wish I didn’t have to take injections, but even that is not so bad…The worst part is knowing that I am going to have this disease forever….that really bothers me, given the progression of it and all…

    • christine
      christine says:

      no-one re-acts in the same way,absolutely no-one.I have sec.prog.,but really feel that I get off more lightly than an awful lot of sufferers.Exciting times ahead ,treatment wise though .

  22. Mary Ann
    Mary Ann says:

    Thank God I don’t have MS but I do have two precious granddaughters who have it. So I am familiar with the struggles of MS. Both of my granddaughers attitudes are great . I also have niece who has it. Please pray for these three. Thank you.

  23. Lela Ruth Curtis
    Lela Ruth Curtis says:

    . Unless a person has MS , it is difficult for them to understand how we can have all these symptoms. I have been called lazy, drunk , crazy and lots of other names due to some of these symptoms.

    • Lawna Sullivan
      Lawna Sullivan says:

      I have worked in a hot restaurant kitchen in the summer for the past 14 years until optic neuritis and heat intolerance/ fatigue has arranged it so I can’t this year.Then I was diagnosed with MS. If I ever hear of anyone call me lazy I think a spastic involuntary muscle in my hand or foot may connect directly with their face. I find some people could understand, but don’t seem to want to put in the effort. That stresses me out.

  24. Kim McDonald
    Kim McDonald says:

    My wife suffers from Muscular Dystrophy. Your symptoms and hers mimic each other’s in so many ways especially but not limited to the fatigue, the constant fatigue. It is with an understanding Heart that I relate so well to the plight of all sufferers of these Neuromuscular Diseases.The constant pain from muscles that never stop hurting from the unceasing attacks are beyond human endurance.
    I applaud your description of the terror that you go through on a daily basis and add my voice to yours and all who suffer from this never ending nightmare.
    God bless you and your family, for as we all know these terrible diseases encompass all who love and try to help in the efforts to maintain a loving compassionate home.

  25. Richard S
    Richard S says:

    Most of what I have read is what I’m feeling numbness vision is off slightly and swallowing and appetite is nill eating lots of soup and have lost lots of weight but that is good for my diabetes lol am I ever gonna feel good again ?

  26. Mark Pace says:

    You are an amazing woman and a great source of inspiration for anyone dealing with this unpredictable disease. I thank you from the bottom if my heart for your courage and words of comfort and humor, that get me through some really tough days.

  27. Michael Schutz says:

    The only thing that is missing is the first thing everybody says….stress, you need to reduce your stress….Bahaha, now that’s funny. How? I have a disease with no cure, the world is crazy , money problems, 2 teenage girls, one of which just started driving….ha-reduce stress, yeah right

  28. Lisa Baker
    Lisa Baker says:

    I have “trampoline days” shocking balance issues. Try walking normally across a trampoline. End up playing “hall way pinball”.
    Also vision crapola, I call them my “gladwrap days” when everything looks like I’m looking at things through oily, vaseline smeared glad-wrap (cling wrap). So car stays parked in the garage those days.

  29. Arlene
    Arlene says:

    I understand but cen’t even begin to know how this feels What can those of us who love someone who has MS do to support you. My daughter lives 1000 miles away and I am so frustrated

    • Judy
      Judy says:

      Listening and opening your heart and mind. If you want to physically do something for your loved one (I know most people who love us MSers feel frustrated that there is nothing that they can do to “fix” us), ask if there is something that you can do for us. Many of us are very independent souls, so if we ask for help, we need it. Often, just a supportive phone call helps us. Sometimes the words “I can only imagine what you are dealing with” are enough to know that you are on our side. Keep your spirits up. 🙂

  30. Terence
    Terence says:

    You missed a symptom: Heat Intoleranceh

    When the temperature rises (usually in excess of 22ºC) I resemble a rag-doll. I cannot hold up my head and collapse in a heap. In the old days giving patients a hot-bath was one way to diagnose MS, have I have tepid showers.

    • Rachel
      Rachel says:

      Agreed. My mother doesn’t have an internal temperature regulator… she gets hot and cold really easily. (And we live in one of the only parts of Australia that regularly drops into single figures, whilst also regularly getting above 40*, so this is a problem). So she’ll sit there, thousands of jumpers and blankets, shivering away, when most of us are somehow able to keep warm enough. (This happens at about 15* downwards). When it gets hot (30*-35* or higher), my sister (who has Lyme-like disease, possibly MS) and I are useless, too, though.

      Also, sleep paralysis? Most people don’t list this as a symptom but I know my mother and some of our friends have experienced it. I mention it because my mother’s seems to be caused most regularly by overheating in her sleep.

      • Steph
        Steph says:

        Yes I think it is important to include temperature intolerance (failure to regulate body temperature). It is definetly nit just heat intolerance but also cold. I went camping and was shivering uncontrollably at 40F overnight. I thought I was going to freeze to death!!! It was very scary! Heat also affects me by makung me disoriented & exhausted! !
        I was diagnosed in May of 2007.

    • Lawna Sullivan
      Lawna Sullivan says:

      I agree,heat intolerance is one of my main problems right now and persistently for the past few years, although I have just been diagnosed recently. This is an important symptom that should be on the list!! Great piece of writing though! If it was modified to contain this important symptom I would love to share with family and friends so they know I am not absolutely bonkers! 🙂

  31. Wendy Mueller
    Wendy Mueller says:

    One of worst pain days ever yesterday. Lymph nodes so swollen and painful on top of my MS issues. In bed by 3 pm yesterday, need to get in shower to get to ob/gyn 2day by 11 30. No interest in getting up/moving. Fiancé massaged me for hours yesterday.

  32. Huss
    Huss says:

    Hi I’m Huss and a few months ago I had no idea what ms is. Until I meat this girl how’s name I won’t mention, she had MS and I just read this so I can understand what she is going thru. And a lot makes sans now I haven’t been helping only adding to pine and for that sorry.

  33. Nicole
    Nicole says:

    I have trouble but I can truly say It scared me to death at first but now I just learn and grow xox I am blessed with life so what if I have to battle little bullies everyday , it’ll only give me more will power more knowledge , patience ‘ understanding & clarity ! I’n honoured to have my family and friends , thAnkyou xox and thAnkyou to all those ppl out there that deal with this and still smile !! Your all truly amazing xox

  34. Martijn Schulte
    Martijn Schulte says:

    WOW is have had MS since 2000. I live with this every day. Not everything everyday at the same time. But it is the best description of what i have been going thru. I will save this page so I can easy describe the disease thank you.

    • Deanna Kier
      Deanna Kier says:

      Wow I’ve probably had every-one of those symptoms at one time or another as had every person who has MS. After awhile you just quit trying to explain it. And yes sometimes you do wish some could walk in our body just for a few minutes. But I am a whole lot better than some. And what’s so weird –An MS’er can usually spot another MS’er!

  35. Gayla Miller
    Gayla Miller says:

    Love positive living with MS. Being able to share this with family and friends is great.

  36. Jo Potter says:

    I will have to copy that one if you don’t mind. I have one thats put out by our MS Society and even it is so wishy washy its pretty useless.

  37. Sarah Crain Manick says:

    And yeah, all of the above- bowel AND bladder problem. More symptoms than I realize until I sit and actually think about it but that’s what I try NOT to do! MS is just ugly!!!

  38. Sarah Crain Manick says:

    Having to watch my baby girl play in park with her dad because a 15 minute walk at the mall has me down for the count- probably for the day… Yeah normal everyday stuff I do my best at not letting it bring me down but more than people realize how bad it hurts to already miss out on fun stuff with her. She’s only TWO.. I know how it was a lil tough on me as a kid when my mom who also had ms couldn’t do the normal things but I always knew she loved me and we had a closer mom/daughter relationship than anyone I knew.. Still so freaking hard- pushing guilt away as much as can, just missin the smiles and laughter is hardest..

  39. Lisa Hudson Haines
    Lisa Hudson Haines says:

    Kim, I hate with all my heart what you have to deal with on a daily basis. I don’t have MS, but I do have Rheumatoid Arthritis, Lupus, Osteoporosis, & Fibromyalgia so I know about the pain related part, but some of what you go through does differ from mine… I’m here if you ever want to talk. I’d love for us to go have lunch one day soon…

      • Steve Carrigan
        Steve Carrigan says:

        Get a spinal tap. Painful, but will determine if you have it or not. My daughter had same story!!

      • DeAnna
        DeAnna says:

        Spinal taps do not always show if u have M.S. an MRI or the spine and head is a better indicator

    • Jan
      Jan says:

      Just diagnosed with a autoimmune disease. Waiting on blood test to see which one. I pray its not MS even though I do have a lot of symptoms you’ve described. I’m praying for you. I’m scared to death!

  40. Candice E Foster-Torongeau says:

    as much as I have read I have never seen Itching as a side effect. SO GLAD to read it today. Last night I had to put hydrocortisone on my leg b/c I had been scratching the heck out of it. No bite, just itchy. I hate it to b/c I don’t realize how hard I scratch and I end up tearing my skin. I need to make a Human size scratch post!

  41. Marie Mooney says:

    I’ve been prescribed tablets by my consultant for my involuntary twitching. Stopped taking them after a few days cause they were making me itch like crazy.

  42. Kari Rousselle says:

    Thank you for sharing that. I haven’t been diagnosed yet the radiologist reports my lesions are suggesting MS but the Neurologist thinks other things. Waiting for more and more tests. But every one of those symptoms listed in the blog, I have or had in the past 6 months.

    • Anita Summerfield
      Anita Summerfield says:

      Me too. I have the majority of the above symptoms yet no diagnosis. I have an MRI showing myelin damage on my brain , chronic bowel problem, fatigue. Spasms. Clumsy hands. Severe eye pain and major frustration. I am 46, no diagnosis, no job, family and friends who do not understand the condition! Very hard to stay positive but very reassuring to know there are others out there too! Thank you .

      • Lesley
        Lesley says:

        Please try to stay positive I know it is hard it took me two years to get my disability I lost four jobs within a year after having a senior management position because I couldn’t retain anything. I was so stressed that when I finally got my hearing I was bawling before you can walk then I was so nervous I was at the point of a nervous break and I couldn’t take anymore. I couldn’t quit crying and compose myself long enough to answer more than three questions and they granted me my disability

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