What are some the weirdest MS symptoms you’ve experienced?


Community Answers
  • Erica
    2 months ago

    I’ve yet to see anyone else say they’ve experienced my weirdest symptom. And I only know it’s a symptoms from another “weird MS symptoms” page my good friend (and fellow MS sufferer) found one day.

    His has happened to be three times since being diagnosed (five years ago).

    I will find something funny, or someone (even myself) will say something funny and I will start laughing. Then, I’ll be laughing uncontrollably. Keep in mind, what was said really wasn’t that funny. Eventually, that uncontrollable laughter turns in to downright hysterical crying. And not laugh-crying, straight up balling my eyes out. It has lasted upwards of 10 minutes. I’ll stop crying momentarily as I try to catch my breath, and then it just starts back up. It’s the craziest thing.

    My boyfriend has been the only witness to this, and the first time it happened, he thought I had really lost my mind.

  • Lupe
    4 months ago

    I’ve recently started to feel a pain in my side as if a hot knife was stabbing me or as if there’s a splinter that keeps stabbing at me but there’s nothing there. It reminds me of the pain I used to get years ago from wearing underwire bras. I’m assuming it’s from my MS, I can’t think of anything else it could be. I think we all agree, all symptoms are weird and annoying.

  • JustMarge
    1 year ago

    I feel an electric shock in my head and left arm, but mostly when I drink alcohol. I was a very social drinker. Now I have to decide if it’s worth the discomfort before I imbibe. I know I don’t need to drink to be sociable, but it’s hard to be the sober one.

  • staciejmichael
    1 year ago

    Well apparently, per my therapist, my bi-polar can be attributed to my M.S. Apparently 10 to 15% of us have bipolar. And I get itchy hands a no fingers. Itch so bad like the bone itches. I tried running water on them and had the sensation change from itching to fire. Won’t try that again. And I had a year of suffering. And then there’s the famous losing a word in the middle of talking. Always the most important word . And so frustrating , because I can’t ever come up with an alternative or even anything to describe it. Just come up empty. It sucks.

  • eve23
    1 year ago

    I believe I share every weird symptom that is posted here. The one that bothers me most is the inability to cry like Dvora. It is very hard to let things build up inside and I can’t let it out. I need to cry. The pain has numbed my emotions and I hate it. I wish the pain to go away and for people to understand how much this disease is ripping my soul away…

  • Kristina
    1 year ago

    This has been the site has helped me the most understand and communicate to others about issues with my MS. I thought I was more alone avoiding the phone and becoming hermit like. Please keep this site going!! I like the participation questions too!!
    Ok, my oddest symptoms…One of the favorite of my friends is that my speech no only becomes difficult with fatigue or stress, but I start sounding like I have a Croatian accent. The only way I have a region to say it is from is a Cab driver from Croatia thought I was from his homeland.
    Another odd symptom is caused from my dystonia(uncontrolled movements). It often looks like I am giving people the hello nod, when I am just twitching. A funny story involves my uncontrolled bowing movement and a group of Japanese tourists. I hope I did not end up offending any of them! We seemed to be in a bow off for awhile, which only made me bow uncontrollably more. lol
    Another odd one occurs while standing still. It feels just like standing on the beach, facing away from the ocean, with the sand disappearing under my heels from the surf. For a time, the noise and sound in a movie theater was painful.
    My ability to drive varies. I seem to fall under the drivers hypnosis much much faster than ever before if I do not have a passenger to chat with.
    One symptom my doctors find very puzzling is that I have bladder issues that mainly come by to tell me I am pushing my body too much. Besides that more normal symptom, I am one of the few that don’t feel burning and pain during a “normal” bladder infection or irritation where most do, I feel it in my hands when I pee, and no, it is not because I am peeing on my hands. lol
    I was sent to have my vocal chords checked by an ENT doctor. The cords vibrate at times and make me sound very hoarse, likely due to dystonia. The ENT Dr was retiring the month I met him. I was his very first patient that he was able to do a full exam without any numbing aids. He said many people have tried because the numbing stuff tastes awful. He was tickled to get to experience something new so close to retirement, and got his colleagues to come and check out my throat sans numbing too because I have almost no gag reflex.
    It probably should be on the common symptom list, but florescent lighting often sets off my symptoms. In the past, I had to shop with sun glasses and hats. Now I just do most of my shopping online.
    I hope this list might help some others feel more comfortable with their odd duck moments. Best wishes to all for a good summer!

  • Carol W
    1 year ago

    The most bizarre issue i get is the ice pick headaches and my left foot feels like it is in a cold puddle of water or my legs have water dripping down the back of my calves. It is always interesting when I have the feeling of spiders or ants crawling on my legs or face. And let’s not forget the “amazing” ability to see small things one hour and the next hour not be able to see anything smaller than a billboard! Gotta love optic neuritis!

  • Debbled
    1 year ago

    I get the sensations of a bug crawling on me. Mainly my legs but sometimes my stomach. I have even changed from long pants to shorts so that I can see there are no bugs on me but my brain keeps telling me there is. I HATE BUGS!!

  • Nancy W
    1 year ago

    My weirdest and most upsetting symptom is the result of a swallowing defect. When I am fatigued and don’t pay attention, I start uncontrollably coughing. It can last on and off for days or a week. My pulmonologist thinks I am breathing in my saliva or mucus when this happens. I have some throat and tongue strengthening exercises am seeing a speech pathologist for this.

    This is particularly upsetting because I used to be able deal with my fatigue by resting the next day. But now, I have to be very careful not to get fatigued at all or I will suffer with the cough, which is fatiguing in itself and leads to a downward spiral of other symptoms.

  • Sheila0313
    1 year ago

    Debbled … I so appreciate you posting about the bugs crawling. I thought I was just imagining it and didn’t think about it being MS symptom. I am constantly checking my stomach for bugs that I just know are there. I hope you see this bc there is no reply button under your comment. This happens to me a lot but mostly at night when I am sleeping bc it wakes me up. But maybe I just notice it more at night. It doesn’t hurt … it just feels exactly like a crawling bug.

  • GN Glaser
    1 year ago

    Have had MANY different symptoms over the years but the weirdest is my newest: some of my teeth recently have quickly become brittle and broken off! My dental bills so far this year total $7400! Maybe it’s not MS-related but so far, my docs can’t find any causes so I wonder if there’s a relationship.

  • donnasulton
    1 year ago

    Are you on Tysabri? I was on it for about 4 years and lost a lot of my back teeth, top and bottom right side. My neurologist let me go off of it and guess what, the infections and tooth loss went away!!

  • Debbled
    1 year ago

    It could be in relation to your meds if you take any that really dry your mouth out. Teeth will deteriorate quickly if that is happening. My dentist couldn’t believe how dry my mouth was. He had to keep the spray mist going pretty much nonstop. I had already had partial dentures but ended up having to have the few teeth I had left pulled and just go to complete dentures. Sometimes I can’t talk because my mouth is so dry. Keep an eye on your blood sugars also as a pretty high blood sugar will complicate the dry mouth. Good luck to you b

  • Maggie
    1 year ago

    I was diagnosed with complex partial seizures 2 years before my initial diagnosis of MS (at age 50). I’ve been on seizure meds ever since…I still have break thru seizures that have me grinding my teeth (only in my sleep, because I don’t know its happening) so badly that I’ve pretty well ground them all the way down in the back, and all the meds I’m on have wrecked my gums to the point of telling my husband I’m ready to go have them all pulled…at least when I take my teeth out at night, I can’t grind them…

  • Cathy Chester moderator
    1 year ago

    I’ve had all the “typical” issues like numbness, tingling, fatigue, weakness, cog fog, the MS hug (now THAT’s a weird one!), mood changes, etc. But I have odd sensations as well like someone is brushing against me in different parts of my body. The itch that can’t be located but absolutely drives you crazy and you can’t stop until you make yourself bleed. Now that I think of it there are so many crazy, crazy things that happen that it’s all so odd. Argh!

  • DVORA
    1 year ago

    MY OLDEST SON DIED OF RENAL METASTISIZED (SORRY CAN’T SPELL) CANCER ONE YEAR AGO THIS MONTH —
    I HAVE YET TO CRY FOR MY CHILD — I LOVE MY SON — THAT IS SO VERY UNLIKE ME THAT I HOPE I CAN BLAME THIS ON – MS – DOES THIS ILLNESS EVER BREAK OUR EMOTIONS TO THIS DEGREE ?

    I AM OVER 70 YRS OLD — YES – I HAVE 2 YOUNGER CHILDREN AND 4 GRANDCHILDREN — MY SON PASSED JUST BEFORE HE TURNED 50 YRS —

    HAVING OTHERS I LOVE DOES NOT LESSEN THE PAIN — THERE IS A HEAVYNESS ON MY CHEST ALWAYS — BUT I DO NOT CRY —
    I LOST ALMOST 100 LBS DURING HIS PAIN AND STRUGGLE —EVERY SYMPTOM I HAVE EVER HAD RETURNED WITH A VENGENCE —-

    I COULD NOT EVEN BE WITH HIM — HE WAS IN ALASKA – I AM IN FLORIDA – I WAS NOT WITH HIM IN PERSON AT ALL —

    I COULD NOT TRAVEL BECAUSE OF BRAIN SEIZURES — CAUSED BY ACCIDENTS FROM MS CHALLENGES —

    DRS PUT ME ON EFFEXOR — LIKE THIS IS TREATABLE DEPRESSION — DID NOTHING — STILL HAVE NOT CRIED — THEY TOOK ME OFF MED SINCE IT MADE NO DIFFERENCE —
    SAID I HAVE SITUATIONAL DEPRESSION — THAT EVERYONE GRIEVES DIFFERENTLY —

    ASKED IF THIS WAS FROM THE MS ?????? NO ANSWER FROM ANY OF DRS — NEURO — PRIMARY OR PALATIVE CARE —

    SO I AM ASKING IF G-D FORBID ANYONE HERE HAS EVER GONE THROUGH THIS —turning to stone—– WHEN ANY NORMAL HUMAN BEING WOULD BE CRYING UNCONTROLLABLY BECAUSE IT IS SO WRONG FOR A PARENT — NO MATTER THE AGE — TO LOSE A CHILD —

    IF ANYONE HAS — I AM SO SORRY FOR YOUR LOSS AND PAIN IN YOUR HEART —
    BUT I AM PRAYING THAT THIS — IS — AN –MS — THING — COULD YOU SHARE WITH ME –PLEASE —

    MAY G-D BLESS YOU AND GIVE YOU STRENGTH TO ENDURE …. DVORA

  • plb1975
    1 year ago

    I have the same issue. I lost my dad and sister and am recently separated. I have just felt stoic. I agree it is probably because there is a lesion in the area that regulates emotion. In addition, depression is also a factor. I feel if I did start crying I would not stop. Blessings to you and prayers coming your way!

  • Nancy W
    1 year ago

    Last year, several friends and family members died and I felt something was wrong because I wanted to feel sad but just felt numb. I remember being at a friend’s funeral and just feeling lonely. I talked to my family Dr who sent me to a psychiatrist. I think I was on too much antidepressant medication. I stopped my meds and took a lower dose of a different one and started seeing a counselor. It has not been an easy year since then because now I do feel my feelings. I sometimes feel sad or angry or whatever other negative emotions come along but I feel this is appropriately. My counselor helped me see that numbness can actually be depression.

  • spacity102
    1 year ago

    My family has experienced several losses in the last few years. Two nephews,a brother-in-law, both my siblings and my dad. I have not been able to cry for any of them. I’ve tried…listening to sad music, reading sad poetry, sitting by their graves, etc. But although it all makes me sad, I can’t cry. I’ve talked to my neuro recently about it and she said I have lesions in the area that controls my emotions. I wish I had talked to her sooner rather than carry this guilt so long.

  • Lisa Emrich moderator
    1 year ago

    I’ve experienced several different MS symptoms over the years: numbness, tingling, weakness, optic neuritis, fatigue, loss of balance, spasticity, heat sensitivity, depression, anxiety, and more. One of the symptoms that comes and goes which seems the strangest involves altered sensations (paresthesia). Sometimes it feels as though a cotton ball or feather is gently brushing against my left cheek just under and next to my eye. It usually happens when I’m really run down, fatigued, and tired. There is nothing I can do to make it go away besides rest and sleep, otherwise it drives me crazy.

  • Meagan Heidelberg moderator
    1 year ago

    Although many of our community members will be able to chime in as well, here are some common, and not so common, symptoms that MS can present with that you may find interesting; https://multiplesclerosis.net/symptoms/. Thank you for commenting and being a part of our community!

  • Devin Garlit moderator
    1 year ago

    There are definitely some symptoms I never expected with MS, like loud noises bothering me and even sudden pains. The weirdest symptom I’ve had though has to be this feeling that my legs are soaking wet! I can be just sitting there, even wearing pants, and it’ll feel like my legs are soaked with water. It’s so weird that I still look down and even touch my legs and pants to check them because it feels that real!

  • 1 year ago

    I’m glad I read this MS blog! I have the same sensations also, and have even had to touch my legs to see if they’re wet. MS is so random and affects everyone so differently! I know this sensation is not pleasant, but Im glad that others go through similar feelings too. I think it might be related to bladder function because sometimes if I’m holding my urine for too long this happens. Sometimes it feels like I’ve urinated myself. The CNS system never seizes to amaze me in how complex and interconnected all the parts are!

  • Heidi K DeLaughter
    1 year ago

    Absolutely Yes!! I had it starting almost 20 years ago, but I wasn’t finally diagnosed until 2014!

    I would get this sensation on very cold water being dumped down my back, and then I started calling it cold gasoline because after the cold wet gas being dumped on me, it then felt like someone lit my back on fire!
    The next thing that would happen is I had to run to the toilet to pee and pee and pee… Etc. I would stand up and then within seconds had a painfully full bladder and had to sit back down and pee forever! It felt like I lost gallons of fluid.
    Also at that time period I started feeling like I was being electrocuted and when it happened I just couldn’t function, I still get it but the meds do help. The saddest part was I must have told at least 40 different Doctors over the years without a single one doing anything about it!
    The way I found out I had MS is getting in the hot tub and losing my vision and losing all my strength.
    I have to stay cool or I start losing my sight.
    I cannot handle loud and sudden noises like dishes crashing together at a restaurant, I start shaking and have to leave.

    So many other things too.

  • Kim Dolce moderator
    1 year ago

    I think they’re all kind of bizarre!

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