7 Strange and Unusual Symptoms of Multiple Sclerosis

Multiple sclerosis (MS) is a disease which is unique to each patient, which means no two people suffer from identical symptoms. While there are many symptoms MS patients share such as pain and chronic fatigue, there are also some very strange and unusual symptoms that some may experience.  We’ve put together a list of some of the stranger symptoms of the disease based on information from verywell.com and healthcentral.com.

The body reacts to the weather. 

Many MS patients say their symptoms get worse depending on the weather. Humidity can exacerbate the symptoms of MS for many sufferers and some even report feeling strange when there is a thunderstorm—that their body buzzes and feels tingly in an uncomfortable and unpleasant way.

The body reacts to dental work.

Some MS patients experience a worsening of symptoms following routine dental appointments. It hasn’t been established whether this is stress-related (because few people enjoy visiting their dentist) or for some other reason and researchers have been unable to find a link between the two.

88 comments

  1. Ken Krouse says:

    We really appreciated this article – it was very helpful to know others are experiencing some of the same things my wife is experiencing – she’s not “crazy” or “weird” in some way just a “normal” MS sufferer – my wife has MS and often experiences some of these “strange and unusual symptoms” – (maybe wish the title was changed to “7 less common but often experienced MS symptoms in MS sufferers” 🙂 – We feel that humidity, humidity with high heat, and cold affect her MS negatively – she feels worse after dental work is done and since she has had a lot of dental work done, we wonder also if there is a correlation with getting/suffering from MS due to the amt. of dental work she has had – anything negative (a cold, stress, a cut, etc.) makes symptoms worse – sun seems to help her feel better – she does not feel she can tolerate long flights well – hates the feeling of being in a plane for a long time – not so much “twitches” but muscle spasms for sure she experience, mainly while in bed it seems – feet getting hot but feeling cold (and especially while in bed) is right on – she has not experienced the hugging feeling – I sure wish there was more of these articles to help these MS sufferers know they are not alone – to realize that these are common or at least somewhat common symptoms of people who have MS – Thanks for the article – well written and right on!! MS affects people in many different ways – people need to understand that MS sufferers aren’t losing there minds when they talk about some of these things to others

    • Ellen Dobson says:

      OMGosh Ken Krouse!! You just described me to a tee!! I mean EXACTLY ME!! It was as if you were talking about me & my exact problems & symptoms! Thank you for sharing your wife’s symptoms because in some strange way it’s comforting to know I am not alone with these exact symptoms.. I mean even the dental issues, was spot on for me. Thank you for your compassion & understanding of your wife’s struggles, cuz it’s so refreshing to read someones comments about MS symptons with such clear concise description & understanding from a NON-MS sufferer.. – usually people who fo not have MS, no matter how close they are to a MS patient, still struggle with completely understanding or even totally believing the symptoms their loved ones experience & suffer from.. God Bless you! & thank you!!

    • Dakota says:

      When I was diagnosed in 2014, it came not long after I had an experience when it felt like my head was disconnected from my body while at a store. Just recently I was petting my cat and I could see my hand going one way but I could swear up and down it felt like it was at a 20 degree angle.

      • Richard Eklund says:

        I have RRMS. Diagnosed in 07. I work with a man who’s wife has it. And yes he takes wonderful care of her. God bless our caregives!! I weight train, and it helps me tremendously. God bless us. Please never give up!!

    • Rhonda Waldroup says:

      You seem so in touch with your wife. I know she truly appreciates that. My husband is there for me when I need him but don’t want to hear about the day to day symptoms and it hurts that I can’t talk about them. I do think he doesn’t believe that these weird thinks happening to me is real or have anything to do with MS. Stay connected with your wife. It means the world to a MS sufferer.

      • Marlene says:

        Most husbands want to have blinders on when you have MS. They’d just as soon ignore it, hoping it just goes away. They can’t handle the thought that their wife has something wrong with them.

        • MARION RAMER says:

          EXACTLY, I was married 28 yrs and got divorced cause HE SAID “IT’S ALL IN MY HEAD”!!! GLAD I AM FREE OF HIS NEGATIVENESS!!! He remarried a Healthy woman within a year!!!

          • Andy LaMotte says:

            Mine as well after 20 years! I don’t concur with the statement men wanna ignore it or something urn a blind eye

    • Debbie Witter says:

      I understand what all of you are saying. I am 63 and wS diagnosed when I was 36—-all so new then. They, too, thought that it was all “in my head”!!! Went through years of MRI’s on— portable units on a semi-truck!! My multiple experiences sent me to the psychiatrist!!!! I have been very lucky—-this year I started having to use a rolling cart type walker!!! God is good—I still teach school!!!!

      GOD BLESS TO ALL OF YOU, Debbie

      • Linda SansSouci says:

        Debbie – I had the same experience when I suffered my first Optic Neuritis, I was 38. One of my closest neighbors (who didn’t really know me that well) was sure I was having a “nervous breakdown” and was not very sympathetic. However, since my mother had MS while I was in my teens, I was pretty sure I was going to head down the same road. Actually, my mother WAS diagnosed with a nervous breakdown and I found out about 10 years ago that they had given her “electro-shock treatment”. I was devastated to learn this, since she lived in a large City with two major medical schools and it seems to me from reading about her high school experiences in her papers after her death that they had relegated her from an active, humously lively person, to one who frequently sat around quietly in darkened rooms. I am now 74, and altho presently having my first real relapse in 15 years, I’m so grateful that I was able to work until retirement at age 64 it was the Avonex treatment for 15 years before that that seemed to help for me. I will now likely be exploring some oral medication choices. Baclofen works pretty well for the spasms, but I can only take it if I have time to NAP. The main thing, Debbie, is to remember that we KNOW our own bodies and our own history of symptoms and sometimes it is difficult to explain that to others, including some doctors! Your positive attitude and value to society will keep you motivated, I am sure. Keep up the inspiration!

        • vicky says:

          I had several MRI’s 20 years ago and was told I had MS, I had optic neuritis, and started treatment with Interferon, over the years I was on copaxone,novantrone. In 2003 a DR. told me I didn’t have Ms What I had been having were strokes. They took me off all treatment for MS and put me on blood thinners, I still feel some of same symptoms as when they said I had Ms.Just thought I’d share

      • Pat says:

        same thing here remember having to see a psychiatrist he would hold up things like awatch pencil and a nickel ask me what it was told him I’m not stupid I was sick took 10 yrs after first mri to get diagnosed have ppms a pain have even more pain in feet leaves me in tears. my husband took early retirement to take care of me some days he has to help me in chair put me on and off potty. He is the best hubby in the world

        • Sandra Spang says:

          I am happy that I also have the world’s best husband.I was diagnosed with MS at age 20 and thought he would probably leave me. It was never an option – I am happy for you too! Mine is the Dean of Student Affairs at a Community College and he works all day and comes home and does my work. We will celebrate our 60th wedding anniv. in May!! I seem too be entering a bad stage. I am told that having had 9 major surgeries within 10 years stressed my body and now I have had 4 bad falls. Eye’s are freaking, constant pain. Finally bought a $7.000.00 bed that does everything but fly and now I sleep most of the night.I have the usual bladder, bowel stuff, sensory stuff. Once counted 34 symptoms related to M.S. and that was a while ago. I am participating in a major college’s study on pain relief help with less medication. (It has helped.) I get depressed – am ambulatory with walker but have had 4 horrendous falls of late. I have also found one main thing about MS. YOU ARE THE EXPERT. After years you know yourself and changes/remedies as well as or better than the Doc. I had 4 back surgeries and one was mishandled by the gen. surgeon who moved my internal organs so the osteo could get to spine. He did not tell me a hernia was caused and let to develop until i obtained 3 CT scans, showed them to pain doc. We were both horrified to see a quarter of my stomach opened and bowels beginning to protrude. He said to find help fast. I was fortunate enough to find one who did a “sleeve” and brought skin up over open area, tucked under spleen, and sewed it.The process took 5 months during which I developed diabetes. I no longer have it or 80 lbs. A Miracle – no diabetes. Feel better but am now unsteady. I pray this passes. And I pray you find answers. None will be permanent but some can make life better

    • Linda L Halvorson says:

      Never thought about dental work but anything vocal is impacted by MS. I had trigeminal neuralgia years ago, intense pain on anything mouth related-chewing, talking, brushing teeth. It’s often caused by MS. Also, at the end of the day talking is hard due to fatigue.

    • Pam says:

      It may sound bad but I know you will both understand. Reading this was comforting. For the last 3 months the pain in my legs and hips can go from a 6 to a 10 plus not long after I get into bed. It’s terrible. I also have profuse sweating all the time!! I’m sorry to hear. Your wife has this pain also.. thank you for sharing these symptoms.

  2. Scott says:

    I believe the reason these are not as common of symptoms and MS is because they are more than likely associated with primary progressive multiple sclerosis, such as myself. Other than the dentist, and flying, I have experienced all the symptoms frequently. I can sit and watch the muscles in my arms and hands flutter. My feet and hands both go from freezing cold to normal within minutes.

    • Sarah Jane says:

      I have suffer all of these symptoms frequently apart from the flying because I don’t fly but I have relapsing remitting MS so unless it has progressed I think it’s normal MS and the fact that they don’t list these symptoms that we suffer in silence every day.

    • Tara Taylor says:

      I don’t think they are all associated with primary progressive…I have RRMS. DX’d in 2005 I have muscle spasms, I twitch funny at times especially if I let myself get over fatigued. I have gotten the”hug” feeling it’s awful!!! And the The feet thing with the pain, I have been getting these pins and needles is how I have described them because they start all of the sudden and they are the most painful version of pins and needles you can imagine and then there just gone. But not fast. No they stay for awhile. I have trouble swallowing now too. Kind started slowly of a few years. I have had to have my esophagus stretched once already over 6 months ago and I already need to go back and do it again. So my MS friend, these “weird” symptoms aren’t only doled out to those of you suffering with the Progressive form of this monster. I also can’t tolerate heat at all. Heat with humidity is even worse. Did I miss anything? ? And pain I guess pain is a common symptom…lucky us! ❤️ I’ll laugh before I’ll cry…this monster won’t win! I won’t let it beat me not today!

      • Tracy Howard says:

        Wow just reading your text helps me to keep going into don’t have MS but my sister doses and I just want to help but sometimes it’s hard I can’t be loud or can’t upset her and ect.but I’m there for her and anyone else who is fighting this monster

        • Linda Bassford says:

          I also have a sister with MS. I can only just be there for her. I always say you have to walk in someone’s shoes first. But I have a tendency to feel their pain. It is hard all the way around

      • Sandra Thomas says:

        I also suffer from P.P.M.S. Started with M.S. They thought I had a stroke 11 years ago. went through all the testing . Finally they sent me to a neuro. he did the MRI, then the spine tap and said I had M.S. Did not put me on any meds at all even though I was numb on my whole right side. Went in for reg appt. every 6 months. still did nothing. I got fed up with him and found a M.S. doctor in another city 2 hrs away as I had every pain described , left side was going numb , had the m.s. hug in my rib cage. Spine was hurting were I could not walk, quit driving. I was falling all the time, in the heat I was blacking out . lost my hearing in my right ear, vision is almost gone now ! So my primary dr was helping me more than he was. Saw all kinds of doctors. Then I came across someone who had the same problem and suggested the place I go to now. I made the appt. took me 3 months to get in and the dr took the time did all new test and diagnosed me with P.P.M.S. He has me on meds to help some and could not believe the other dr was not treating anything that I had. In fact I am getting ready to start the new Ocrevus to try and slow down my illness. And now has over half of the other doctors patients . He is an older dr from Mayo Clinic and works with you, and listens to what is wrong and any complaints you are having. You can contact him anytime through e-mail and will be answered within a day or two. I am 60 now. And he shows you respect not like the last one I had at all. As I can not do steroids at all and he will look for something to help me when I am having problems .And I am in constant pain but he tries his best to give me something to help but not to strong that I get to were I am tired all the time. As I hate having to spend all my time sleeping . Like the weather is over 100 his nurse will e-mail me to stay inside as he knows that my body can not take it. So if you do not get results from 1 dr find another !! I will keep fighting this illness as long as I can, as I enjoy having my grandchildren around , but they understand if I am having a bad day not able to move around. Yes I use a rollator and a wheelchair now !The canes I had to give to my 30 year old daughter as she was diagnosed with M.S. 2 years ago and she goes were I go. She has 4 children ages 14 -3 months. So she is fighting m.s. along with severe migraines, seizures and can only work part time now as it wears her out! So her husband tries to work extra hours. We are each others support when needed.

        • Luis says:

          TRY CANNABIS FOR ME GOT P.P.M.S AND DONT LIKE NARCOTIC SO WENT TO PAIN MANAGEMENT GOT PERMISION FOR CANNABIS BETTER THAN NARCOTICS AND KEEP ME ACTIVE AT ALL TIMES..!😎

  3. Amber says:

    Yes its nice to read about a lot of the stuff I’m going through I was diagnosed with ms almost a year ago I have been suffering from the symptoms since I was little a my parents and doctors thought I was crazy no one ever listened to me they said I was a hyperconderiact until I moved to. Michigan almost a year ago

    • Tara says:

      I’m sorry no one listened to you…you have a diagnosis now and you aren’t crazy! Good luck! Be brace and fight back against this monster! ?

  4. Esha Sharma says:

    Rightly said… I feel many things so similar. This article is useful to keep a check. M.S symptoms keep changing every now then so such articles are necessary to know an outline of different things people can feel.
    Thank you regards Esha Sharma

  5. Geoffrey Boyarsky says:

    Thanks for this validating article. I have experienced all of these at one time or another in the past 35+ years.

    In ’97 while seriously symptomatic but pre MRI diagnosis, I was hauled out of my office by paramedics after I reported to my doctor’s office a tightness in my chest (the “MS Hug” as I later found out), and numbness in my arms & hands. They thought cardiac event, so suddenly I was transported to the ER, where that possibility was eliminated right away with a heart monitor. I was three weeks out from an initial appointment with a neurologist, who the ER contacted. He suggested a brain scan to confirm, seeing as the hospital I was in had one, and several hours later the MS diagnosis was confirmed.

    These days I don’t get that MS Hug often, although lots of other neuropathies stop by for a visit, beyond the ever-present numb hands & feet.
    Recently I have felt like, inside the flesh around my left waist, there is something small trying to dig its way out with a toothpick. For years I will occasionally feel like there is an insect deep inside my ear, just walking around. It’s amazing how much bodily weirdness we learn to accept and live with.

    • Nancy says:

      I have that same insect feeling in my near too. Have had it for years and thought I was crazy. Now I know I am not the only one. ?

    • Norma Ames says:

      I just want ask about the tingling in your wrist & the feeling of something in your ear! I’ve not been diagnosed with MS but have those symptoms plus chronic tiredness & memory problems & unstable on my feet. I’ve fallen a lot in the last couple of years.

  6. Thank you for posting this.

    Tony from NY. I was diagnosed with MS 8 years ago. I thought it best i list my symptoms, maybe someone out there will be comforted knowing I know and understand your pains.

    Symptoms that end with “Thank You Mother Nature” are the one’s that have substantially subsided since starting a new Medication just 2 weeks ago, it can also mean that i personally discovered a my own natural way of dealing with it. The others ending with the sad face followed by the happy face are my persistent aggressive and stubborn symptoms. Sadly to say, these will probably persist and get worst for the rest of my life. The happy face is me reminding myself how precious life is, as well as having the passion of figuring out ways of coping with these stubborn ones without it affecting me and my loved ones, and sharing them with you all. Although i will not go into much details here, if you have any questions about me or just want someone to chat with that knows your pain, feel free to email me at tmarkovina “THE AT SYMBOL”CLINICAL-IT dot com ([email protected]). Some websites automatically strip an email address if detected.

    EXTREME MUSCLE SPASMS “Thank You Mother Nature”
    COLD, wet feeling Feet. Numbness 🙁 🙂
    LOSS OF FEELING in my hands, not just the finger tips 🙁 🙂
    FATIGUE- Was constant, spontanious and sporadic now. “Thank You Mother Nature”.
    MEMORY LOSS SHORT TERM 🙁 🙂
    MEMORY LOSS LONG TERM 🙁 🙂
    CONFUSION ATTACKS 🙁 🙂
    SOCIAL ISOLATION “Thank You Mother Nature”.
    MUSCLE TWITCHES 🙁 🙂
    ANGER BURSTS, SADNESS. “Thank You Mother Nature”
    PINS AND NEEDLES, Mostly hands, feet. 🙁 🙂
    KNEES BUCKLE, increasing in frequency, very spontanious 🙁 🙂
    CONCENTRATION WITH TASKS 🙁 🙂
    FOCUS ABILITY – SHORT TERM “4 HOURS”, 🙂 🙁

    I sure there is more, losing my concentration on this :), also will be going to Dr’s office soon. Stay happy.

    • Jenny says:

      Thank you; I am having increasing problems with short and long term memory, as well as “confusion attacks.” It’s nice to hear someone else has similar problems. Well not nice but comforting that I’m no alone. Stay strong.

      • Dori Black says:

        Yes, I was diagnosed in ’01 but have had symptoms since high school years in the late 80’s. For some miraculous reason, I do not suffer with pain, but haven’t been able to work since the birth of my 3rd child, when I got terribly ill, lost my fine motor skills, and took a major setback graphically. After this, I started Tysabri and have taken it for 8 years and remain JC virus negative, thankfully. Everyday I tingle from the top of my head to my toes, suffer with eye twitches, memory loss and many other cognitive issues. I thank God for Tysabri and for my ability to remain on it.

    • Dawn says:

      Thanks Tony and thanks to Jenny. I agree; it’s not nice or fun but hopefully along the way we also are able to share what helps deal with these challenges. God bless! Focus and concentration issues are a bear. Wondering if either or both of you had the Neuropsycological testing?

    • Doreen Eastep says:

      I have been going to Drs for years,telling .I all my systems,I have had no Drs send to a specialist ,And now I am in so much pain,I can no longer con concentrate. Numb and tingling ,Pins and needles ..

    • Vicki says:

      Hi your response about your MS sounds exactly like what I go through also!! The worst is I feel like I’m losing my mind at such a young age. It sucks!!!! I can’t stay organized I fiddle around with my bills & paperwork and I get no where!! So frustrating in life. The easiest things in life that we’re a no brainer is now so difficult. It turns your life up side down. We have to learn to live with it what choice do we have. I pray for us all!!

  7. RuthAnn says:

    When I go to the Dentist and he works on my right side. It makes my right side of my face go up or down. I’ve had nose surgery twice, had a perfectly straight for 27 years. Now it is fallen over and L shape. I have had Vertigo for 14 years (24/7). When I go to lower altitude, my vertigo is better, but my feet and legs swell. Heat really bothers me. I can’t have loud noises around me. It makes my vertigo worse. They are building houses around me. It also gives me a bad headache. Little by little by body is going numb. It weird my toe will feel like it itches and I can’t scratch it, because it’s numb. I will be sitting and I will feel like something is crawling up my arm. I look and there is nothing there. MS hug sent me to the hospital, because they thought I was having a heart attack. I have had rashes all over my body and everyday they would switch to a different spot, they lasted for about 3 weeks. It seems there is a new problem every week. I won’t let anybody in my house that is sick or who have family members. I catch everything. What an adventure we have, with having MS.

  8. Jenifer says:

    Prescribed pain medicine worked, then stopped working. So the doctor upped the dosage, which started helping, then stopped helping, at all. So (at the end of this bottle of prescribed Gabapentine)I’ve purchased and used Ibuprofen instead. I have not felt the usual pain since swallowing it.

  9. Jenifer says:

    Prescribed pain medicine worked, then stopped working. So the doctor upped the dosage, which started helping, then stopped helping, at all. So (at the end of this bottle of prescribed Gabapentine, with about 4 more refills)I’ve purchased and used Ibuprofen instead. I have not felt the usual pain since swallowing it, today. #happyhappyjoyjoy But I don’t think Ibuprofen is safe to consume daily. But (now that my prescription won’t)it works. I’m waiting to see how long it will work.

  10. Amanda says:

    Amanda,from West Virginia. I was diagnosed 5 yrs ago and started the Paleo diet about 1 yr ago. After 2 yrs or so of going down hill fast and not much help from doctors? Except Copaxone injections, physical therapy, and pain medication. I suffered (still do at times) with walking, balance, numbness and tingling in hands and feet, perythal neuropathy, optic neuritis, and many more. This is one nasty ugly disease! I turned to the Lord and taking better care of my body. EVERYTHING we put our bodies is EXTREMELY IMPORTANT my friends. I’m not where I want to be, but I praise God I’m not where I use to be! Praying for anyone who has MS or any autoimmune disease! ?

  11. Cathy says:

    Hi I’m Cathy,I have not been diagnosed with ms yet,but I’ve been doing research on it and a lot of reading I’m going to a a Nero,and going to have the nerve study test in may,I have a lot of these symptoms that are mentioned here.,last night in bed I had tightness in my chest and it scared me,I have tingling in my feet calves and now going up into my thighs ,hands and arms
    I get short term memory loss at different times,I have not had any muscle mass in my legs and arms for years despite all the excercise I’ve done I always wondered why I couldn’t build any muscle ?the pain in my calves starts with ice cold ,then burns as and than pain and tingling no numbness as of yet,I get hot hot bottoms of my feet,they have gotten beet red while I was in bed,I can’t stand anything tight on my legs or feet.oh I have more symptoms ,but idk if I have ms or not .does some of the things I’ve mentioned sound familiar? I also have a constant ringing in my head ,sometimes a sharp pain in my eyes
    I guess I’m scared !.If anyone can help me with some ans..please do Thank You .Cathy 4/12/17

    • Yes they do please find a neurologist that will listen and take time to work with you and there are always website with ms information on it also if you have a good general doctor they will help you work through some of problems or willing to know you get best help
      Good luck

    • Jeannine says:

      Most ms people have what looks like very tone legs everyone used to say even in my thirties, why don’t your legs jiggle. Never had a problem building muscle, just keeping it from spasm and charlie horses. It maybe the only plus of ms. I hope they have done extensive blood testing. Vitamin deficency of b12,d3 and magnesium can cause some of those problems – no joke! I used to work in a lab. Look up b12 deficiency. Western blot Lyme, lupus panel. A spinal tap would answer a lot of questions (if b type cells or onylcolognal bands in fluid), along w MRI and brain scan. If u do have it and it’s active, you might need to go on iv steroids immediately to prevent further nerve damage. I was almost completely numb on one side foot to right rib cage and back shoulder. Felt like I was wrapped in magazines with duct tape. If someone stabbed me I wouldn’t feel it. Also weird no feeling between legs, front or back. It’s called transverse myelitis. Not everyone gets this.

      • Amy says:

        I have the same, went undiagnosed for a week until I was paralyzed from my chest down. IV steroids brought the inflammation down but the scarring of the spinal cord has done irrepairable damage.
        It’s horrible, no one would help me until I could no longer walk for 2 days. Two different ER’s saw me 4 times in 7 days and still wouldn’t admit me. Such a shame, now I am permanently disabled.

        • Donald plescho says:

          Hi Amy,I can feel for you and ur frustration ur going through.my name is Don I’ve going eighteen years being misdiagnosed with primary progressive ms.ive lost my mobility with extreme weakness on my left side.i struggle to walk like the mummy dragging my left leg with a walker.every ms attack left me weak and parilized..I couldn’t walk,urinary retention,fevers,bowel issues.i was hospitalized may 2016.mris were done,spinal tap lots lots of blood work.finding were 0.i had another severe attack in oct 2016.with fever, urinary retention ,parilized couldn’t walk or stand up.i was in local hospital,my wife manage to get me transferred to U-Penn in philly pa.four hrs in the tunnel for MRI’s with and without contrast.the next day they informed me I had primary Progressive MS and that I’ve had it for eighteen yrs.year 2010 I was diagnosed with spinal stenosis the nurologist never check for MS.i had surgery on c4-c5 and c5-c6 with no improvement in mobility.Right now I’m waiting on Ocrevus.i make road trips to u-penn in philly.Good luck to u,be strong.Don

  12. Michelle Noe says:

    I have a weird symptom. I hear things others don’t. Music very quietly playing. People talking in the other room but no one’s there. I have called my husband to ask if he’s home from work because I thought I heard the door downstairs open and close and people whispering. Each time it was “Nope, you are freaking yourself out.” Has happened
    more than once. Creepy.

    • Donna says:

      Michelle, I have had strange things like this happen as well. If I have trouble saying a word,I look forward and upwards where I see letters and I can spell the word, I just can’t say it. I hear people talking, as well, and feel sometimes that I am losing my mind. Knowing that others are feeling,hearing the same things makes me more at ease. Also, I have never had a flu shot. My MS dr, told me the MS has its own immune symptom. He denies saying that, but, my husband verifies he said it. I have been sick 7 times in 37 years. NO SHOTS FOR ME!I was diagnosed in August of 1989. I am not on any medication for MS. I have the numb, tingling feet that are hot and cold at the same time.

    • Carole says:

      I’ve had ms since ’91 and I hear all those things you describe. Never thought about it being part of my ms. Thanks for sharing that.

    • Lori says:

      Both me and my mother have had this unknown voices. I’m not sure what that is either. I usually hear them in the shower, and it’s not the tv. Nor neighbors. My mother told me this, I said me too! No one has said we have MS, but we have the same medicines. But, she is 78, I’m 53.

    • Tina says:

      Wow! I have never heard anyone else ever mention this. I have had those exact experiences for a few years now. Sometimes I think I’m nuts. Sometimes I think I must be picking up some other energy or something. MS never entered my mind as a possibility. I’m going to mention it to my neurologist next time I see him. Thank you for sharing this.

  13. Patience says:

    I have had attention span, concentration and short term memory problems since before I actually got diagnosed with RRMS October 13, 2006. My nuerologist ordered a nueropsychological test done in February 2007 which they used to come to the conclusion that three parts of my brain were already hitting impaired range, my attention span, my concentration and my information processing part of my brain. My memory was actually still in Superior range. I often have issues with my feet and hands being numb or cold or hot and tingly with all…

  14. LAURA says:

    Maybe it’s the amalgam fillings people get their teeth filled with at the dentist? After seeing a program on 60 Minutes on this, a woman who had just been dx’d with MS had all her amalgam fillings drilled out and replaced with white fillings, and her symptoms went away. Sooo, I did the same thing(all 13 fillings) after being dx’d in 1987, and went into remission for 10 yrs. Now I am secondary progressive remitting, but I always wonder if that’s what helped.

  15. Brenda Johnson says:

    Another one is PBA, pseudobulbar affect. Which is uncontrollable laughing or crying at inappropriate times.

  16. Bernice says:

    70% or more people with Optic Neuritis develope MS. I don’t think that has anything to do with the other stuff the (Not quite finished DR described) Many things affect the nerves, even a computer job and curvature of the spine, but ON and if you find you have Dawson’s fingers, you are bound to be diagnosed quickly. That is the smoking gun.

  17. Lauren says:

    OMG to the flying. I thought I was going crazy. I could not stay still for even 1 minute. Sitting on my legs, shoes off, shoes on, standing up (yes I’m short) sitting down constantly. I have no idea how my husband didn’t throw me out the emergency door! I would have. I finally took one of my sleeping pills (yes severe insomnia ) to knock myself out. I couldn’t take it! I am not afraid of flying I’m afraid of this happening

  18. Kathy says:

    Thank you all for being transparent with your symptoms. I’ve had RRMS symptoms since the 80’s but was not diagnosed till 2015. I’ve had two years of terrible exacerbation of symptoms. Thankfully it seems to have calmed down a bit. It’s difficult to figure out what is MS and what is just my body showing I’ve had an active life?.
    I deal with:memory issues, bad balance, fatigue, poor vision and pain in my eyes, hot feet that feel so cold, ringing in ears, numbness/tingling and sometimes feels like an earthquake is going on inside causing sharp pains and tremor feelings. After multiple IV steroids I have had success with Aubagio (I tested high JCV) All my life I’ve been a real people person and held an exciting work life but after 2014 so many changes physically/neurologically that now I can’t drive or get out alone so I have a more isolated life. I still choose joy every day and ask the Lord what I get to do today…. MS might have my body but God has my life and future so I refuse to complain.
    It is great to see I’m not alone and thank you for listening., Kathy

  19. Deborah says:

    I am currently being tested for all of my symptoms. I am the one that is finally putting all my symptoms together and telling my dr. I want to be tested for MS. I have frequently had the buzzing feeling throughout my body. I had to hold myself tight because it felt like buzzing electricity running through my body. I also feel so terrible when it’s humid without fail. I’m not hoping to be diagnosed with MS but I am hoping to find some answers to all of my symptoms and definitely some solutions. It is good to know I wasn’t imagining these weird symptoms.

  20. Marilyn Leaf says:

    I am going to a neuro soon but scared I have ms.I have painful feet and sometimes feeling hot or cold.Not sure yet but it is my only symptom.Accupunturist said maybe peripheral neuropathy so waiting game for now.Does anyone feel this is a sign of ms? I am 65.

    • Tim Bossie says:

      Hi Marilyn. Thank you for the question. There are many signs and symptoms of MS that can be related to what you’re experiencing. However, without an MRI you can not get an accurate diagnosis. We hope that your doctors visit gives you a few answers.

    • Nancy says:

      I have had MS for over 28 years. My feet always feel cold…but..I reach down and feel them..warm. Crazy. Worst in bed. I wear footies to bed. Been on many shots On AUBAGIO 14MG FOR A COUPLE YEARS. HAS HELPED. Sure beats the shots. Reduced my fatigue a lot plus other common symtoms.

  21. Ann Balog says:

    Trouble with focus may not be due to M.S. It may be one or more medications. Both Neurontin and Amitryptiline
    were problematic in that I would get to the middle of a sentence and not be able to find the next word. There was a news cast about executives who had been taking Neurontin. The executives were having short term memory losses. This led me to check possible side effects and memory loss of my other medications. Amitryptiline was another medication with memory loss.
    Please read the package inserts that come with medicines. Your local pharmacy can help with this.

    • Tina says:

      That’s a good point about side effects of medication, as they can be the cause of symptoms for some people sometimes. Among many other symptoms I too have had difficulty with word finding and short term memory. I am not on neurontin or lyrica. And though I have severe fatigue I am not on anything for that either. I found one that helped for a few years but no longer does. I only take zanaflex to help with bladder spasms if they get bad, so that’s not effecting my memory or word finding. I take baclofen at bedtime so I can get relief from really ad muscle spasms in my legs, feet, and butt. On a few occasions the spasm pain in my legs was so bad I needed to take a baclofen during the day, but certainly not on a regular basis. So for me the short term memory and word finding problems are not related to medications. They seem to be a direct symptom of RRMS.

  22. Susan Hassler says:

    You can add Difficulty with Swallowing to your long list. I was diagnosed in 1988. Been in remission mostly since, was on Betaseron for 19 1/2 yrs. went off to try pill forms, Tecfidera, 2 yrs on and out of remission, developed swallowing problems, back on Betaseron now for last 3 months. Doing well, but not totally in remission. Hopefully soon.

  23. Nancy says:

    Thank God I’m not alone in this. My family thinks I’m crazy! I have every one of these symptoms however I refuse to take medications or go to a neurologist again. I was diagnosed on 2004. Have not been back except to my regular doctor. I’m 69 years old. It’s gotten worst in the last couple
    Of years so will probably have to go soon. Thanks for this article and all of the comments. I was really feeling all alone in this. ?

  24. Susan Payne says:

    Hi, I was diagnosed years ago with MS. I had to go to the emergency room with numbness on right side, once & a severe headache which turned out to be Trigeminal neuralgia. Optic neuritis now.
    Unusual symptoms:
    1.Heat intolerance is so bad that I have developed a fear of going outside in the summer. Guess I should live in North Alaska. 2.I have felt numbness in the past but now I am feeling everything intensified! But they’re strange feelings like my legs crawling and sensations up my arms are so odd to me.
    3. I have anxiety that has suddenly gotten seriously worse. This is far from normal. I will literally start shaking. Anyone else?
    Is this from a vitamin deficiency?
    4.Bladder spasms anyone? Jumping up and down like a Mexican jumping bean. I take Azo standard for bladder pain and it works well.
    Help? ~ Susan

  25. cynthia says:

    does anyone else get what I call ”bleeding pain ” in your leg ?If your leg could be nauseated and have pain running down into your foot….that’s what it feels like…..awful..! I also get the face pain and tingling with a ”bug in my ear ” feeling.Thank you all for posting…..it is nice to not feel alone.

  26. GARY SHAMBLEN says:

    About the craziest feelings I’ve had are some mornings I would have sensations on the balls of my feet like something was pressing hard against them for a couple seconds or so at a time in different places. First time I thought it was our cat pushing with her paws in different places on one foot and then the other. There’s also been the feeling of vibrations moving up or down through my body like I was a tuning fork. I started taking B7 about 9 mos. ago and these along with the hot flash sweats haven’t been present for a while.

  27. Cheri Greer says:

    Weighted blanket generally used for autism has helped with my sleeping better, which had helped emencely with the other symptoms…

  28. Elizabeth Rastatter says:

    Hello all fellow MSers, I empathize with all, as I have some of these weird sensations. For the last 8 months, I have had terrible Restless leg syndrome. My feet feel like they are asleep, they hurt, pins and needles feelings, the compulsion to move my feet all the time, and they are painful. Now trying my second drug to help. Feel it all day, but is worse at night. Keeps me up; and for several months, I have averaged about 3 hrs. asleep a night. Sometimes I do not sleep at all. Does others have this experience, what helped it go away?

  29. Michele Stowers says:

    I have all of these except the flying, I don’t fly!! Had the MS hug so bad once I did think it was a heart attack. Good luck to all and fight like there’s no tomorrow UNLESS you win. Have a good attitude and be able to laugh at yourself!! ❤️❤️🦄

  30. Wow! Guess I’m really not that weird. Have MS diagnosed in 1979 while serving in AF. Guess that’s we (both military and I kinda swept it under the carpet “for later life challenges). Wound up with 25 plus yrs active duty and must have gotten out in 1996 at the right time plus I found my life’s partner (3rd time was a charm!!). Finally saw an MS specialist (complete MRIs!!) and when I hobbled in, he said you don’t need to say anything – PPMS! Have been having fun with about 90% of the symptoms. First date with Ocrevus has not done a whole lot so far. Hoping the 2nd infusion in March 2018 helps!

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