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.

Discuss these and other MS symptoms in the forums!

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  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!!

      • Lili Lusk says:

        I have suffered with gum pain for years. I had all but 8 teeth pulled out because of the pain. The Dentist thought I lost my mind. I have no clue what causes the pain, when it comes it is a nightmare.

          • Faith Ray says:

            Last yr. I had surgery for Trigeminal Neuralgia. It’s considered brain surgery. I have about a 4″ cut behind my ear. Before the surgery I was in ICU for the pain with a morphine pump. I couldn’t talk, swallow medication, eat and had to sleep sitting up so I wouldn’t lay on that side. I went to ER 4 times within 3 days, twice by ambulance. They kept sending me home thinking I was a drug addict looking for pain medication. My brother who works at the hospital informed me of that. I’m still having the same pain but only if I wash my face and rub upward. But now it just gives me a shock and lets go of me instead of continued electricity without stopping. If feels like someone just stuck me in the face with a hot fireplace poker. Before surgery they just kept poking me. After the New Year I will be calling the surgeon to talk with him about a possible plan to get rid of the rest of the pain. I’m already on 400 mg of Tegretal 3 X a day. Look it up, it’s called the “suicide disease”. Good luck to all those out there suffering with this horrible disease.

        • Debbie says:

          Omg!! I’m in the process of the same thing. I have 4 left to be pulled 9 already done. Now… I’m thinking what have I done. I was diagnosed with ms I have drop foot and Graves’ disease. The dentist didn’t want to do this, I was like I have insurance just do it. 😞

          • Leanne Broughton says:

            I feel like broken record but had suffered with oral/facial pain for many years, saw the dentist many times (he also kept me in the dark). I have trigeminal neuralgia. The dental profession are scamming us as this is not a dental problem but seems to be a problem experienced by many due MS.
            I feel let down by all. I don’t want to scare early diagnosed MSers but this is very important to know what it is when it happens. I have been in excruciating pain many months/years total. I know it is the suicide disease, more reason to get the word out early.

          • Adw says:

            No diagnosis as of yet, but I spent the last 2 years in a nightmare of teeth extractions of my entire upper mouth. Have implants now. Hoping to afford to have my painful lowers done someday. Previously healthy gums and teeth. Every 6 month cleanings etc. 44 yo. So shocking, embarrassing and disheartening. Thankful for these shared posts.

          • Tia says:

            I was told twenty years ago that the number one killer of people with MS, is not the disease itself; but people committing suicide. The pain gets so bad and no one sees it on the outside (therefore they don’t understand or don’t care to hear about it). Basically we live in silence, suffering tremendously.
            I was reading this because right now and the past months each day since the past week has gotten so bad, I’ve been deathly ill. The pain started on the side and now it goes from a little left of my tummy around the side to my spine and up the back, up and over head to top of my eyes. I’m like a snake trying to get out of bed. Slithering, crying out. It literally feels like my muscle or skin is pulling/ripping off of my ribs. I don’t know what to do. Everyone it there if my specialists have said they believe it’s neurological like the MS hug. All I know is NOW WHAT!! I honestly don’t think I can’t take it much longer. Sometimes I feel it’s a cop out that every single thing is to be blamed on MS w,/o even investigating. They have done a biopsy and be a CT but say it’s MS. Today I woke, needed to pee and literally cried out every time I moved as I rolled around trying to get to a place I could get up.
            All I can say is thankfully you have someone by your side that understands and cares as I don’t have that. Every bowed out once I turned ill.
            Blessings to each of you blowing in the wind ..

        • Judy Ashlock says:

          Hi Lili. I am Judy. They removed all of my teeth because I kept falling and got my body infected and spent quite a bit of time in the hospital. Sent me home with a wound vac. and a pick for another 2 months, they had to give me such harsh prescription, it killed all the veins. Felt sorry for the nurses. This has helped. God bless you and I hope they can help your pain soon.

      • Kellie says:

        I am with you both I haven’t had dentist work done and I am suffering Ms hugs boy oh boy I say when does it end. Thank you it is so good to share with people that understand.😘👍

          • Lara says:

            I get MS squeezes on a regular basis. Was always just around my left rib cage. A few days ago I started getting them in my right leg from under my knee clear down into my foot. I read it’s most common in your torso area, but can happen to just about any part of your body. Serious bummer. Also, everyone calls them MS hugs. Not me. I call them squeezes. Hugs are pleasant. You know, when you hug someone. There is nothing pleasant about MS squeezes. They are always VERY unpleasant, and sometimes hurt. Sometimes alot. Sometimes a little. That’s why I call them squeezes. I was diagnosed in 2010 with PPMS. I HATE it…

        • Natalie says:

          Just diagnosed with CIS but based on scans likely MS in the works. 37, no prior attacks that ring a bell but I have this Hug for the past three weeks and the legs that feel like you’re wearing knee highs permanently! All the best to all of you who have suffered for so many years ❤️

        • Millie says:

          Have had trimengel neuralgia my dentist was very good diagnosed it! No more dental treatment said didn’t help. Take take co-codamol 15/500mg help pain it can make me sick.

      • Karen says:

        Does anyone experience a “sensation” – not pain – in their back as though they have the “chills, but isn’t cold and, in fact, can be sweating at the same time. These strange sensations are triggered by cold air or stree, though it doesn’t always have to be triggered by anything when they come on. Tegretol sometimes helps but not always. It is so incapacitating & almost feels likewI May be having a seizure with outstretched hands & with absolutely no history of seizures.

      • Jamie says:

        I also am like that with my feet. One hot the other cold…The weirdest and odd experience..I suffer with fatigue almost everyday. I can’t hardly get up to go to bathroom at night much less during the day because my body is so heavy and tired, it’s unbearable. I’ve been diagnosed with MS for 11 yrs now and I don’t think but maybe one month out of all those years I’ve felt good. I put on a happy face and endure the pain because it seems people either say oh your just getting older or I have that same thing and don’t have MS… My MS started affecting my right side first and I had trouble with my balance for yrs. and my right side was very weak which caused my right hip and arm to be affected. I had to have a total hip replacement after 9 yrs then my right rotator cuff repair same year. I had fallen so many times that’s what I think hurt my rotator cuff. But now back and right knee is hurting me tremendously.. it’s not from lack of moving around. I have to take something in the early morning to get me going and in about an hour it kicks in..i get up and get what I can do around the house and if I need to go somewhere I have to take another ( what I call) get up and go pill, to continue for another couple of hours, then mt body is so heavy and my legs and back and knees hurt I just can’t go anymore..I also have cervical dystonia and trigeminal neuralgia also lwhich I have to get Botox for or I’m in a world of hurt and want to give up because seems I have so many things wrong with me, it seems this can’t be real… I tell myself how can one person that was so active in my early years until about 43 or 44 get so much wrong with me.. that’s why I don’t complain anymore to anyone except my husband because he sees it.. It’s so hard for me because it seems I don’t have as many friends as I use to.. but I do have to say I know there are many others worse off than me or I could have something else wrong that I’ll take what I have and try my best to make another day..thanks for reading..

        • Christine says:

          I love you and I’m so sorry you’re going through this. I think I might have this disease. I have to get tested. I’ll be your friend. My name is Christine✨✨👼👼👼👼✨✨

          • Scott Nelson says:

            Hi Christine, my name Scottie, I am 61 and had is MS for 28 years now! tHREW THE YEARS AS WELL AS EACH PASSING WEATHER CHANGE, RIGHT AS i WRITE TO YOU ,i ONLY HAVE TWO FINGS THAT WORK FOR ME. I KNOW THINGS?

          • Geanie Hernandez says:

            I have been diagnosed with Fibromyalgia, but something inside says this has got to be something worse! Experiencing many symptoms, including shocks like electricity in my head, sinusitis chronic will not go away, I’m living on antibiotics and they are no longer working . In fact I’ve gained over 50 lbs taking the steroids also for sinusitis. This started just before I turned 40 muscle cramps , pain mainly in my legs but now I completely feel as if I’m falling apart. I wrote my symptoms den today that coincides with MS , I want to be tested , how do I go about this?

        • Antanetta says:

          Hi make sure you take vitamin D we with MS have to take it and if it gets out of hand we also have to take steroids that helps too I went blind in my Right eye and because of steroids I can see again I had a MRI they found legend on my brain and a spinal tap that’s how I was diagnosed 16 years ago

        • Eric Peterson says:

          there is something wrong with my legs and VA cant seem to figure it out. My condition is getting worse. Lately after I sleep both my legs feel stiff and rigid. I hope it’s nothing serious. I’m starting to fear it’s going to develop into something catastrophic and VA is not going to figure it out until it’s too late. During the day whenever I am off my feet for any length of time both my legs feel stiff and rigid. I’m starting to get really concerned. I feel like I’m 90 years old because of my legs. I just saw a blood doctor yesterday and he is trying to figure out why I’ve had edema in both my legs for over a year. Again I feel like VA is gonna miss something serious until it’s too late… I also have an equalibrium problem when I walk. It comes and goes. I can go days where I feel like I’m walking in a bouncy house for kids. Then I can go weeks with none of these symptoms. I did a google search of these symptoms and It brought me here…What if anything do you think? Thanks Eric

          • How old are you? My symptoms started in 2014 at age 55. Test results are different than those of 20-30 yr olds. The MRI will show only 2 white flairs, doc’s said it was old age. PCP said I was too young for that. Also the spinal tap won’t show anything either. Anerve test was done by a neurologist that showed a delay from my brain to my big toe. It took 2 years to find a doc that believed me enough to do a nerve test. ALSO – 5% of people do not show anything on a MRI. A test for nerve damage on your legs might help. Neurologists don’t always know the intricacies of MS. Prayers to you friend

          • Debra Barton says:

            Hello Eric, Hopefully you have a diagnosis by now. You need to see a neurologist. Tell him or her your symptoms. Have an MRI or two done. Keep a list of symptoms for the doctor.

            I was diagnosed in less than a day. Before I left the doctor’s office from what I told him. I was referred to an Multiple Sclerosis SPECIALIST. here I am 5 years later. I have lost the ability to basically do anything. No driving, I have a scooter, no shopping until I got it. Plus it’s fun to drive! I can’t get out of the bathtub, legs won’t work to lift me. I have a bath lift. I have a stair lift and on and on. Contact me here if you want. I’d like to know how you are.

        • Amy Wagner Welch says:

          I have trigeminal neuralgia and I have had it since my twenties and I am now 50. I found out I had it when I went to the dentist thinking I had something wrong with my teeth. The dentist is the one that realized what it was and Sent Me to the ER. I can’t make that night and kept me out of pain. I have since then I don’t know how many times been to the ER for help because of course anyone that has it knows how much pain I do take Tegretol it seems to be the only thing that helps me and when I went to a neurologist because I never had insurance for 20 years he asked me what I thought I had had it so long for, and I said I just think it has progressed over the years and it’s getting so bad I can’t stand it. Now I’m trying to get disability I have worked all my life and and I’m a widow. I do sympathize with anyone that has any part of this tragic event on the Rajah and I have also seen many things that say this can be a symptom of Ms. So I would like to get an MRI or whatever test it is that sees if I have MS also. I will pray for all that have this and help you all stay well. Amy from Ohio

        • lisa Barfuss says:


          • Isabel says:

            Hi Lisa my name is Isabel I also had a surgeon damage a nerve in my back and was diagnosed with Ms among many other spinal cord related illnesses and the pain has gotten so bad that I spent 5 days in crippling pain bad enough to run to the Er, and my family and husband don’t understand. I feel like needles of fire are being put straight through me. I saw this sight and thought that I can stand up for You and me and others out there suffering from something so crippling that tears just run down my face. It effects the way I think and the way I type so please forgive me for any spelling errors. I just want to tell you that I am also living proff on how crippling chronic pain can be and yes they think I’m going crazy. My mood changes and have moments that my left foot is on fire. Not to say it has affected my hands as well got barely any strength on my left side and i get sharp pains in my hands like hurt so bad I keep dropping things and it’s not on purpose. Hope you know you are not alone.

          • Helen Smith says:

            Hi I feel all your pain I had neck surgery in 2018 and my nervous system is shattered now, I have asked them to test me for Ms as I have all the symptoms bad twitches in my leg , fatigue, I’ve started shaking now in my hands , my walking is off gait , I’m under every consult you can think of because I don’t feel well at all in any shape or foam , And I actually feel people are sick of listening to me now , I have occipital neuralgia which means I have constant migraines but all there doing is chucking pills at me I don’t want to keep taking pills they make me have less quality of life I already have , big hugs 🤗 to you all i feel each and everyone one of you x

        • Pam says:

          I could be you! OMG! My medical nightmare has taken me down so many roads that I have given up on ever being diagnosed with what is REALLY wrong with me. I have Lupus and live in chronic pain! Now I have been told I may have MS due to all my bizarre symptoms! I take nitro due to those “hugs”! Feels like I am going to die every single time.. I fall, I cannot think, I was a super organized person all my life and now if I get my shirt on right side out I’m doing great! Cannot articulate my words without getting frustrated. Being completely exhausted is a way of life. Itching skin, back pain, muscle aches, numb arms and legs daily! I am so thankful to have found this sight.. IM NOT CRAZY!

          • Lisa says:

            Going through it sll now. Crippling back pain and feeling like I have a UTI infection. I urinate constantly. Optic neuritis, headache every day, cant think or concentrate. Crying spells too. I fight every day for my son. Prayers for anyone going through this. Stay strong.

          • Peggy says:

            Wow! I got nerve damage having knee replacement surgery since than back pain like crazy, fatigue, nausea, mri of head showed gray brain matter. Praying it is nothing serious doctors look at you like you are crazy. Please call me if u think your nerve damage has anything to do with your MS. I was told it can trigger. peg

        • Lisa says:

          Sorry to hear about all of this. Wanted to tell you that God loves you and sent His only Son to die for you, so He could have a loving relationship and spend eternity with you. I know that may sound cliche, but it’s true. I lived without the Lord for most of my life and I was so unhappy, and felt as though I couldn’t deal with anything and the pain of it all. But now I have an amazing relationship with my creator, and I’m so fufilled no matter what happens in my life, Gods promises are true in my life, because I believe in Him. He is so loving and amazing and wants that loving relationship with us all, and it’s all written in the Bible. Hope this encourages you. I just sought the Lord in the scriptures until I finally met Him in it. I realized that the Bible is exactly what it says it is. The word of God. Praying for you

          • Julie Thomas says:

            Well that’s definitely a way to get rid of the slackers in your life. Me too! People who I thought would be there for me aren’t. They dropped out like flies. So I just try to focus on the peeps who ARE there for me!! SENDING HUGS!!

        • I know what you mean about not wanting to complain because even the Orthopedic Physician Assistant I see because you can’t get to see the Orthopedic Doctor without going thru them or a NP, looks st me like I’m crazy . He said He can’t understand how I can feel ok
          One day and the next be in
          Severe pain . He doesn’t believe me. 😢. I have serious back problems and he thinks it’s from that(doesn’t think outside the box). He mentioned spine injections or possible spine surgery with fusion , I said I wouldn’t do either , I’m
          80. He sent me for PT, doesn’t much, he didn’t believe how she could say I was in bad shape, then saw him the next day and was 90 percent better.
          He made me feel like the PT and i were both nuts.Today I woke up in excruciating pain in multiple lower leg, couldn’t walk with tingling pain and numbness.Dont know what to do , also feel a band around my leg .Im claustrophobic, about an MRI.,but would do it under sedation. We talked about that for 30 seconds. 😏 How do I get to see the ORTHO specialist himself ? This is second time I’ve been to an Orthopedic office without getting thru these PA or NP’s.

        • Gloria Hooks says:

          Im so sorry for your constant health issues and feeling like you are alone. I feel alone too. I will pray for you and everyone that suffers. 💞

        • Cam says:

          I just recently had a full blown “attack” where i could not move and thought i was on fire.so many symptoms listed here that i have.crying,tingling,numbness,sight problems,falling down,hallucinations and everyone thought i was taking it for attention. I am not kidding.i could not even talk.tbey put me in a psyche ward with no medical intervention, tests, nothing. I was rambling and they said “well, you can’t stay here” in the psyche ward. I didn’t put myself here!!! Someone else did. Nightmare i would not wish on anyone,seizures,convulsions,extreme pain,uti.God bless you and please pray for me.i used to do everything.now I can do nothing and don’t care what anyone thinks.nightmare.i could feel worms crawling over my face and fire and my face was contorting. I was taking ibuprofen and valium to relax myself not knowing what was wrong. ‘(

        • Lara says:

          I try to just take things one day at a time. My PPMS is kicking my butt.😢 My legs don’t work at all. I’m wheelchair-bound. Limited to only 4 to 6 hrs. a day in wheelchair. My time perception is way off. My thought processing is slow. I get confused if I don’t focus on one thing at a time. I have to use a bed pan for bowels, catheter for peeing.
          I can only sponge bathe, and only to right below my knees.
          Have trouble dressing & undressing. Unable to do my socks at all.
          I have ALOT of pain. Meds help some, & barely tolerate the rest. Getting weaker, easily exhausted, hands are crippling up, trouble swallowing sometimes, can’t wash my hair, my husband does it for me with one of those portable sinks, & my balance in my chair is even bad.

        • James says:

          I have suffered with ms now for 9 yrs and im having all sorts of problems with it . I dont complain anymore because thise I know dont really care . im going through some new things that im trying to cope with. I wish you the very best and i will be here if you just need to talk. Thanks for your story

      • Mary,your right side controls your left side and vise versa. The spots on my brain are mostly on my left side, that’s why my right side hurts more. I have burning in feet. More so on my right. Electric shocks. Extremely painful. Also feel cold at the same time I feel the burning.

    • 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.

      • Victoria Olsen says:

        I’ve gone through this twice, definitely connected to IV’s of steroids. The last time it got so bad that my doctor won’t treat my exacerbations with steroids any longer. I had felt like my eyes were falling out, and when I looked at people–as well as myself–I just saw long skinny strands.

        • Tia says:

          You shouldn’t do steroids MS and your Dr should know this. I would find another. Mine even said (PCP) I don’t know what we are going to do when you hit menopause because you can not do steroids as I had asked for my depo shot. You will become a real b. I laughed and said I already am. I asked my neurologist at the time and he said no you can’t take steroids or hormones. Now I’ve found it literally deleted your vit d and w/o that your body doesn’t absorb medicine and it starts eating your calcium out of your bone marrow. I take 50,000 units of vit d monthly was weekly for six months and finally got it up to 38. (If you take anything over the counter which you shouldn’t unless certain herbs, anything including aspirin.. you must take either two hours before or two hours after your medications or they counter act each other.) I take 1800mg of calcium as among other things I’ve got osteopenia now and my teeth are falling apart and my bones ache inside I have lost three teeth by falling as it has attacked my brain and was ripped off by a dentist 9800$. Just last night six years after the fact I said I have to get my teeth fixed as my jaw is starting to get these lines. I’m petrified of going to the dentist and I’m pretrified of being ripped off and not getting my teeth put in and then I’m prettified if they put them in will I have massive problems because I’ve already been told by two other dentist that MS puts out a gas that runs in your gums sometimes destroying your teeth and I said oh of course as I’m a teeth person. I love smiles and have always taken care of mine. Now I’m ashamed. Two things I noticed not on here that I’m going to mention well four. Itching. Hair falling out. For both of these soak in coconut oil and sleep with coconut oil in your hair or if you live on the ocean put in your hair if you go. If you ever get stuck, literally.. Where you feel you just can’t move as I did for three hours in the milk dept Later after telling my Dr. He said picture a rock or ball in front of me, if ever happens again as for some reason your mind will then tell your leg to lift. It works. Last thing I can think of and I was diagnosed after two years of tests on my 40th birthday with three muscle nerve diseases and now I’m 58… Every morning and every evening go for a walk it will help you sleep and keep your muscles from stiffening up. (Get a dog, you’ll be amazed at the companionship and how it can hello you when it’s a bad day) Always get up no matter how bad you feel or you may never get up again (stuck and blind for 49 days) Yes it’s wierd but seems at least I do, actually feel like I hear myself tell each part of my body what to do…ie… Right hand pick toothbrush up etc. I never remember knowing my every move before getting ill. Pace yourself, it’s hard but we’ve all thought I feel great let me get it all done now before I can’t…DONT. PACE YOURSELF! Let others help with wet clothes to dryer and groceries and cases of water. It’s hard to lose the pride and ask someone to please grab the cases of water for you and load your car. But eventually you figure out which is worse hurting and being miserable for a week after, or just asking. It has taken me 18 years to start recognizing what my dr’s told me 18 years ago was true ..I was just a strong, proud, independent woman who feels I am now a introverted crybaby. We don’t sleep, we clean, walk, study, make others laugh, try to do everything, can’t say no. We are ok and need to learn it’s ok to say no I can’t. Blessings and hugs just no MS ones lol.

          • Rae says:

            I’m in tears reading your story, it speaks so close to my own life. I too used to be strong and independent now can’t work and lost my home. Iv been dealing with some very dark thoughts your story gives me some hope, stay strong I hope things get better for you

          • Bill124 says:

            Hello. I am new to this and I am experiencing a cold left arm as well as some coolness on the left side of my face. My left leg is a little sluggish but I still get around. My doctor has not started me on any medication as she is having go through more tests including an upcoming pulmonary breathing test. I have been this way for 6 months. Please respond if anyone has experienced this. What should I do?

          • Mark Stroud says:

            Why can/should you not do steroids for MS? I also am skeptical but it seems to be a common treatment when I research options. Do you have additional insight? Thank you

      • 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!!!

          • April Shepherd says:

            My husband and I also divorced as he couldn’t handle the not healthy me. I’m glad I’m with my daughter in Florida , lucky to have her. She’s watched my MS progress and makes it a point to read everything to understand and help me !! #NEVERGIVEUP

          • TruthSeeker says:

            Perhaps your ex will become sick, and his new wife will divorce him, and run off with a healthy YOUNG man. That would be poetic justice, would it not?

          • Mona says:

            Oh yes the dreaded “it’s all in your head” or as my husband calls it my “phantom illness”. Asshole

          • 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

          • Candi says:

            That’s very sad, and selfish of a spouse. If someone loves you, and means the vows that they said, they will go through hell beside their partner without ever considering backing out, or asking “why me”. Where you were weak, she should’ve been strong and then vice versa. I don’t know you, or anyone else on here, but I hate that anyone has to go through this alone and especially the ones that got left. I am going through tests for ms. I’ve had doctors tell me that ms is my likely diagnosis. One is thinking psuedotumor cerebri but the lumbar puncture will tell me which one it is or neither. Back to my point… I know how it is to go through all of this alone. I am myself, but for it fall on the partners deaf ears or getting left by the person that’s suppose to hold you up when you’re down is heartbreaking. I’m sorry and I hope it has turned out to be a blessing in disguise for you and everyone else it’s happened to.

        • Bernice says:

          Amen. Sometime think my husband is in denial f the fact I have MS.However when we go for Dr appt or someone question my illness he takeover the conversation.

        • Barbara Hogue says:

          Not all of us have husbands whom understand. Mine feels I do not try but this not true. My weakness very bad some days.

        • Laura says:

          My husband always tells me that I am faking and to stop making excuses! I have had ms for 20 yrs and have been married to him for 10 yrs and he still is ignorant to all my struggles.

          • Isabel says:

            Hi Laura my name is Isabel and my husband doesn’t understand why I get crippling pain and feel worse at times. I had back surgery and the doctor severed a nerve in my spinal cord now the pain becomes crippling at times and I’m told that it can’t be so bad. Unfortunately they are not inside our bodies for 5 minutes I’m sure they will cry. I get the burning feet sensation and now I get sharp pains in my hands, back knee and ankle all of which becomes a terrible crippling pain and the night sweats are awful not to say I have worse symptoms now. Yeah they think it’s just a little pain how terrible that not many people can understand the struggle and pain we are in. God bless you and I hope you have better days.

      • Rachel says:

        I know you posted this ages ago…but this is exactly how I feel.

        My Husband doesn’t take any notice of when I say ‘I don’t know’ or ‘I can’t remember’. It’s almost like if I pretend I’m ok then I’m not ill, but if I mention anything I am ‘making a mountain out of a molehill’. I’m so upset with how he speaks to me. He’s a great dad but a shit husband most of the time. He snaps at me so much for the stupidest of things.

        • Peg Lyons says:

          I color too, and I stitch quite a lot. I find both activities very soothing. I used to have a sewing business, loved to sew but it requires so much movement — up and down from machine to iron to cutting table is wearing. I miss it & I have so many unfinished projects that I’d love to work on but I can’t seem to find the motivation.

          • Stacy says:

            Put a square of the special material that is used to sew oven gloves. Next to your sewing machine with your iron. I am a beginner sewer I sew in between feeling good and pain. But I love it so much.

      • Eric says:

        My mother was diagnosed with MS shortly after i was born. That was 1973. Sadly, she passed in 2008 and the only significant discoveries in all that time seem to be symtoms of the MS sufferer. Fortunately she did not live with any severe pain but the muscle spasms required valium. Prolonged use of valium and progression of the MS made her lucidity fade. Her faith prevented any fear or hopelessness. God bless each and every MS sufferer as they battle the familiar enemy everyday. Also hooe this aside may help someone on here misdiagnosed or undiagnosed. A girlfriend of mine had lived with the burning and shock-like pain around her midsection down into her thighs around to her spine and up into her chest. She had been told many different diagnosies including Fibro, MS, hypochondria! She was in her mid 30s when a colluege of hers suggested a very uncommon and often misdiagnosed cause. It was a constriction of her cervical trunk arteries and nerves on her left side. She had mild symptoms as a teenager but it worsened and persisted. A series of 3D petscans confirmed the obscure diagnosis and surgery gave her relief in many ways. I am NOTa physician nor is this post medical advice. But just maybe the right person willsee this and
        Someone somewhere will get help that will be light instead of the dark theyve been trapped in for too long. God bless each of you.

    • 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!!!!


      • 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

        • Karen Siebenlist says:

          Linda. I had never met or heard of anyone else who Also had a family member with it. I was diagnosed in 2000 and my mother Also had it and passed away in 2001. She had been dx when she was 19 and died at 63. Never got to talk to her about mine . When I was a child growing up our family always thought she was faking things to get attention. So sad Felt so ashamed when she passed and especially going through the same things she did. I’d love to talk more to you !

          • Cara says:

            My cousin and I both have MS. I don’t have statistics on how common it is to have a family member with it, but I’m thankful to have someone to whom I can vent and not feel judged for it. We try to help each other when things get rough. He’s 20 years older than I am, and things are unfortunately quite rough for him now 🙁

        • Cathy Peters says:

          Linda, While searching for answers I read your comments. My 25 year old step-grandson is having problems similar to yours. His maternal grandmother died in her late 30’s and experienced what they thought was a nervous breakdown. I’m not sure of the timeline as his 88 year old grandfather is have memory problems. Before his grandmother died she had an “electro-shock-treatment”. I’ve been married to his grandfather for 47 years and I want to help our family. Any help you can provide will be greatly appreciated.

      • 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.

    • Beth says:

      Agreed. These symptoms may be unusual to someone who does not have MS, but most of these are quite common in MS. The wording is odd as well. “Twitching” is actually tremors.
      “Hot feet” is often described as burning feeling. Pins & needles in the extremities is neuropathy. Again, all are quite common in MS. Hope your wife is doing well, Ken.

    • Donna Milberger says:

      My husband and I both have MS, Can’t handle heat or humidity, restless legs,(night) but also on long journeys. NO to dentists. My back on fire at night.

    • Hello I have primary progressive MS which didn’t start till I was about 70. I am now 82 and doing OK . I can’t move myself I can’t get out of bed but I am very lucky to have slings that can move me from bed to commode etc. I lost my husband’s several years ago so now I have caregivers that come in and help me every day with everything. I am lucky but it’s not much fun. Are used to have that should be I used to have that hugging feeling but it has gone. I have also suffered for many years with spasms in my legs. They were very nasty and finally I went to a new neurologist who prescribed a drug that miraculously made all the spasms go away. I don’t want to tell people what to do but please note there is a fix for spasms. Good luck everyone.

    • Sherrie says:

      I have the same affects from the humidity..humidity high heat and cold as well..i thought i was an odd person with MS

    • Suzanne Mann says:

      Somewhere I read “When the student is ready the teacher will appear.” Today I can across the article about unusual symptoms with MS and your informative reply.
      I thought it was my age causing my teeth to hurt and I’ve had extensive dental work done at a horrible expense. Now the remaining teeth are having to be pulled causing my bridges not to work and necessitating further expense and whole dentures. I have what I call phantom pain at the old extraction sites and ringing in my ears something awful. Had I know about MS causing dental problems I would have made a more informed decision way back then! Now I have more expense at a time when I can least afford it. My hubby is retired as well as myself.
      Twitching is an everyday experience as well as the sensation along about bedtime that both feet are blocks of cement that are numb but burn. That’s the only way I can describe them even though it makes no sense.
      These days I have bowel problems which very few GI specialist seem to know about much less how to treat! I am told to stop all pain meds!
      Again, thank you for your informative post as well as the article. Yes,I realize you did not write that but they both provide some information I did not have.
      Why are there so many different levels of Neuro docs? Some only fair, others better informed and some actually stellar? Do you think it is location related?
      Bless you and your spouse. Hope things will go as smoothly as possible for you both.

      • Jean says:

        You ever notice, Suzanne, back when you were in school that some classmates paid attention and others barely passed? Some loved reading and learning and did extra credit and others got someone to do the work for them? Doctors are the same! Some got A’s in med school, some barely passed, some may have paid for their degrees!

        • Josef Kugler says:

          O used to be strong and energetic.now I’m weak and lazy,no energy or even sex drive.not that I could do anything.live just sucks.I’m at worst end nothing is fun anymore.This is not how I expected.My golden years to.be!can honestly say. That I’ve turned into a total basket case.I just hope that medicine will advance to find a cure for this messs.pooping myself at the worst times most embarrassing.Dependant for everything can’t even drive anymore,

    • Cindy says:

      Thank you for this comment on the article. I haven’t been diagnosed with MS but am going through lots of testing right now. I haven’t had the MS hug feeling but I do have a ton of dental work including an implant. I am currently on a business trip and I feel like a lot of my symptoms are worse since flying across country this week. Hoping for answers soon

    • Michelle M Jollie says:

      I’ve had major dental work my whole adult life (I’m 60). I was diagnosed in 2015. However, in 2004 while getting Novocaine I told the dentist I could still feel it (no it wasn’t pressure). Because he knew me so well he believed me and shot me up again. 2 hours after leaving the office I finally felt completely numb. One nerve test in 2016 showed a delay from my brain to my toe. Some meds can take a delay to work. In 2018 I got the flu and it triggered a relapse. My theory is the immune system starts to fight the flu/cold and the MS in unguarded. She’s not crazy. Although 6 neurologists said I was..in certain terms. Until 1 believed me enough to do a nerve test. It’s hard to imagine another’s pain, fatigue and foggy brain. She has a jewel in you!

    • MLC says:

      Join a Facebook MS group and you all will learn more than you want too. We talk about and will discuss how we are doing from the worst to the bad.

    • Mirella says:

      Found this article very interesting and also everybody comments. Funny am now experiencing the jaw pain and the electric shocks. Been to several Drs and am on painkiller,
      Having a lot of trouble sleeping, also sleep sitting up.

    • Marc Loree says:

      I wish my wife was as supportive as you. Im new to this MS nightmare and i have no support. My wife calls me lazy and useless and complains about me to men at her work. They message her trying to pick her up. Shes evil and offers no support to me after 27 years of marriage. She tells me she doesnt love me anymore. Im lost in my own foggy world. Im just waiting for death. Im too exhausted to care anymore.

      • brian brophy says:

        After 25 years my marriage ended Dec 9th 2019. My first thought was how could she do this to me and my PPMS screwed up life. If it weren’t for my Golden Boy Dreadlock Rasta- a natural therapy dog and My best friend and massage therapist Amar I would probably feel like I’m fixing to die at 62. All I can say is find someone to talk with. We all need someone to listen to.
        At least she gave me two months to recover from total knee replacement before she asked for divorce and sent me on my way.
        Amar has really tried to help me with massage and other naturopathic stuff. MS Hug is just about intractable.

      • Get a support network around you asap..you need it, you deserve it,you will not feel lonely and powerless anymore. You will find many who will understand your problems..Do It !..best wishes

    • doreen says:

      Check what I wrote about MCAS. It is responsible for badly damaging teeth as well! Maybe research it a bit to see if those symptoms make sense and then find a great doc in your area. I’m in NJ and go to Dr. Streit who’s incredible so far! And he was recommended by someone else who was long suffering and finally got a diagnosis. He’s brilliant but you do have to pay cash to see him. In my opinion he is reasonably priced given the fact that I’ve seen 17 different specialist types (in many categories more than one doctor each!) over the past 25+ years without a diagnosis or explanation of symptoms so I paid tens of thousands more between appointments, testing, meds, etc. FOR NOTHING CONCRETE! In the long run he’ll be worth it! There is one doc that literally wrote the book on MCAS but he charges an outrageous $5k for the first Appointment!!! Out of desperation I would have gone to him if I didn’t find my doc. But my doc is well worth it and about a tenth of the price for the first appointment and a lot less for subsequent appointments. And he isn’t in a rush to get rid of you and is a FANTASTIC LISTENER!!

    • Hi Ken ~
      I hope I’m doing this rt bc I’ve never written or joined 1 of these types of conversations. So here goes.
      I was wondering if there are folks with this disease out there that choose nOt to be on medications. And if so, what are their reasons? And are the medications making thAt much of a difference?

  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.

        • Heather Lynch says:

          Can you please give me the name of this doctor? I am suffering more and more each day and my neurologist is not helpful at all.

  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”.
    SOCIAL ISOLATION “Thank You Mother Nature”.
    ANGER BURSTS, SADNESS. “Thank You Mother Nature”
    PINS AND NEEDLES, Mostly hands, feet. 🙁 🙂
    KNEES BUCKLE, increasing in frequency, very spontanious 🙁 🙂

    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

      • TruthSeeker says:

        I have had rectal spasms, and that is one of my very worst symptoms. Fortunately, it does not happen that often, but it is extremely uncomfortable, to say the least. I feel like I need to have a bowel movement, but the feeling keeps on persisting, even after I have one,or else I do not need to have a bowel movement at all, but that horrible feeling that I do will not stop, and I get spasms in my rectum. It can be a little painful, as well.

  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.

    • Natalie says:

      OMG I did the exact same thing this morning. I heard noises from downstairs and thought one of my kids was home. Nope. I offen have this issue especially when I am alone in the house. I thought I was nuts. The dental work is so bang on. I had beautiful teeth until they all started to crumble in my mouth. I feel like my tongue is swollen and am always biting on it like it’s 2x size and itchy. My ears. OMG it started with me thinking I had a big in it then it went to the other side and now I can’t stand the itching. One issue I haven’t heard about is the aweful taste I sometimes get in my mouth. I can’t sescribe it but it’s absolutely horrible. No matter what I eat or drink it’s there. Just aweful. However I am alive and I have 3 beautiful sons and that’s what keeps me going.

      • Kitty says:

        Itchy ears and stiff/swollen tongue here too..although the tongue this is better as I also had low B12 and injections have improved it

    • Sharon Wilson says:

      I just began hearing people talking even when I’m home alone. I also started hearing music and singing, even though I don’t have any electronics on in my entire house. Unfortunately, some nights I am hearing people talking back and forth with one another, all night long. In addition to the non-stop conversation that I’m hearing throughout the whole night, I often will hear music at the same time as the back and forth conversation. When I say music, I literally mean it sounds like I’m listening to music being played on the radio. I have realized that most of the music I’m hearing are songs that I know fairly well, so I know the words and the tempo of the musical instruments, but it is really strange that when I hear some songs, I only know some of the words from memory, but I’m hearing every single word of the song, even though I only know bits and pieces of the words for a majority of the songs I’m hearing. I don’t know how it’s possible for me to be able to hear every word of every song that I’m hearing, even though I don’t know all the words to these subs any other time. I’m really worried because I’m hearing these voices and music almost all the time now, and it’s even waking me up from sleeping and keeping me up most of the night now.

    • Sherry BEMB says:


  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.

      • Victoria Olsen says:

        Yes, my feet feel FREEZING as soon as I lie down in bed. They are cold and very painful. Before bed they are normal. This has been going on for over 25 years. Currently, I heat up the foot of my bed with an electric blanket about an hour before bed and shut it off when I lie down. It helps a lot. IF I leave it on, I wake up sweating hot–even in freezing weather. I use to wear socks to bed, but then I’d wake up sweating hot an hour or so later. I’ve had MS since 1986 and these symptoms have been consistent, despite medications.

  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.

    • Shauna says:

      I was extremely sensitive to Neurontin in larger doses. I thought I had pneumonia because I couldn’t breathe!

  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

    • TruthSeeker says:

      I have had rectal spasms, and that is one of my very worst symptoms. Fortunately, it does not happen that often, but it is extremely uncomfortable, to say the least. I feel like I need to have a bowel movement, but the feeling keeps on persisting, even after I have one,or else I do not need to have a bowel movement at all, but that horrible feeling that I do will not stop, and I get spasms in my rectum. It can be a little painful, as well.

    • Pat says:

      Hi Susan. I’ve had tingling in my hands and feet for at least 12 yrs. Diagnosed with MS this past January 2019. Within that same week I was also diagnosed with RA. It’s all so confusing to me as some symptoms can be the same with both.
      Also have the crawling feeling on my legs & arms. I can look directly at the spot and there’s nothing there! My bladder issue is getting annoying to say the least! My anxiety has been horrible for a while now.
      Take care!

  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!

  31. MS Charlie Hampel says:

    My daughter was diagnosed when she was 21. She’s 48 now. She’s been in remission since about 2011, completely off all meds. We changed to a plant based lifestyle then she got well. [email protected] Shes been having some strange symptoms. I ask if she thinks she’s having a relapse & she admonishes me. She could barely walk in 2010. She does most everything now. I’m praying she’s not relapsing because I’m not able to care for her now like I was 7 years ago. I’m 76 & disabled myself so I’m hoping she’s ok.

    • Nicola says:

      I wish I had a mum like you I have other deasises and waiting to hear if it’s ms I have all symptoms water infections to think doctor delaying telling me Cos all to much you a wounderful loving lady nice to read she’s got support

  32. Sheryll Barker says:

    OMG! I do not have MS but I have another autoimmune disease, and I have six of the seven atypical symptoms as well. Worse when the barometric pressure changes, check. Worse after dental work, check. Relapses after being in a plane, check. Body twitches including stomach (meaning the internal organ), check. Sun makes it better, to a point – if I overheat I flare. Wow, I thought it was only me.

  33. R. Turner says:

    People tell me I look great and show very few sx but I suffer a lot alone and in silence. I had MS possibly 20+ years before getting diagnosed. As I age I still have a wonderful quality of life; I work, play and have many hobbies including exercise. At 59, I have noticed a slight decline. I am developing sx I never had before and the are probably based on the stress of attempting to care for my 95 year old mother. I must press on I doubt want to crash and have this disease take over my life.

    • Larry says:

      Does anyone ever get what I call Sponge Bob Head..Feels like someone has got my brain in their hand and wringing it out like a sponge..Then I get whay I call bowling ball head..My head feels like it’s too heavy for my body and it’s going to fall off

      • Beverley says:

        Hi Larry
        I have very similar feelings in my brain and head. I have had them permanently now for several months and they seem to be getting worse. Do your symptoms come and go ? Or are they permanent ?

  34. Aitza says:

    I’m 44 years old and I was diagnosed in 2014. When my Dr. told me the diagnosis after an optic neuritis he was surprised that I already knew about MS. My aunt has been dealing with it since her 20’s (she is on her 60’s now) and my younger brother also has it since his early 20’s. I’ve been on Copaxone, Rebif, Betaseron and now I’m on Aubagio. I have most of the symptoms described here. Lately I’ve been feeling worse. I don’t even want to get out of bed because I’m so tired and my body aches. About 2 weeks ago I felt a sharp pain on the back of my affected eye that I thought I was having another episode of optic neuritis. I didn’t loose my vision, but it felt like something happened to me(I’ll be seen my ophthalmologist next week). There’s a specific symptom that bothers me specially at night, it’s a really strange sensation on my extremities. It isn’t the pins and needles, is more like a vibration, but you can’t see my hands or feet shaking. It gets to a point that it’s painful.
    Now I’m struggling at work because of the fatigue and my hands get tired. I work in the laundry dept. at a hospital and at the end of my shift I have to write an inventory, but the pain and fatigue are interfering with my job. All I’m working now is 16 hrs/week which is not enough, but I can barely do the 16 hours(I have to suck it up and keep working).
    Larry I kind of relate to what you’re saying because sometimes when I’m watching TV or I’m focus(trying to be)on something I feel like a bobble head. It feels like it’s shaking, but I asked people and they don’t seem to notice, It’s a weird sensation.

  35. Shawn W says:

    I am new and not yet diagnosed with ms, waiting on MRI. But to read these comments and have everyone of them plus. I have vibrations across my lower stomach, I have the rectal pain, and pressure like I have to go and it’s very painful, I also have the bladder pain. I have twitching muscles that last for weeks, sometimes the same muscles other times it’s like popcorn all over different muscle groups. The pain all over can get intense, but the problem that bothers me the most right now is the tiredness and feeling of being so weak. I have been diagnosed with fibro but am scared of the MRI and what it will say. In the back of my mind I already know the answer. I have many symptoms of the neurological part of ms. I’m glad to read these comments and know life can go on. Some days I just wonder how much worse is this going to get and will I be able to handle it. The mental issues with memory and anxiety plays with my mind. The vertigo makes me have to sleep on an incline when I lay flat it starts. Thank you so much to all of you for letting me vent and reading your stories to know I’m not crazy or alone.

    • Ryan Golley says:

      Hi Shawn, sorry to hear you’ve been having a tough time. We recently launched the MS News Today Forums as a place to connect with other patients, many of whom have had MS for many years, you can feel free to ask advice, or even just vent to other people who have experienced the same things. Heres a link: https://multiplesclerosisnewstoday.com/forums/

  36. Thionil Jenkins says:

    Hi I am comforted that I’m not alone and I’m looking for answers I also was diagnosed with Fibromyalgia about 8 or so years ago suddenly around 6 years ago I started having unexplained tachycardia maybe an episode or 2 a year with body pain and feet pain getting worse throughout the years my ANA has been high and SED rate and CRP. Recently within the last 4 weeks I have had about 10 tachycardia episodes I have SVT, my whole left side gets numb from my foot to top of my head, numbness in left side of tongue and having problems swallowing on left side. I get that hugging which I had no idea and I have explained it to my doctor and he looks at me like I’m crazy and my right eye twitches. I’m under a cardiologist care for the SVT and on meds and they placed a loop recorder to track them he feels it’s Nuerological. I see the neurologist today I was in bed all weekend my left leg is heavy feels like someone is pushing me down on my left side and heaviness and pins and needles and I feel electric inside. I have impulses to urinate a lot also. Legs cramps in my left leg and tightening in left leg. Thank you for everyone’s insight could you more I’m the same person I was 4 weeks ago!

  37. Marie smith says:

    Hi I’m in the proces of being tested for ms I’ve been getting numb hands,feet, but just put it down to my mattress. Until one day I shouted up the stairs to my daughter that her dinner was on the table all of a sudden I had a strong viberation up my spine like a shock. So I went to my docs’ he looked at me like I was mad,sent me away with naproxine.a few days went past and I was having a bath,I got out and reached for my towel’ I swung the to around my back as it was cold and to my horror I had a mirror in front of me my whole body went stiff even my tongue,I could only watch and cry.i couldn’t call or move I could feel my muscles start releasing as my body warmed up from the towel it only lasted about 30 seconds. Has anyone else experience this please.

  38. John Rusch says:

    l would like to know how to just say goodbye i was married to someone for 22 years and this dam m.s took the love of my life away m.s messed my head up and i did things wrong the thing that gets me the most i still feel her in this house even we are not together i still think i see her and hear her there are days i wish i could just let go but what hurts the most is she has told me she still loves me someone tell me what to do

  39. Shawn M Sobaszko says:

    Hi to all! Everyone’s story is unique and informative! I have not been diagnosed with MS or anything for that matter! I have a plethora of symptoms that have not amounted to a solid diagnoses. I am a 61 year old female with a history of sarcoidosis of the lung. I have had Hashimoto’s thyroiditis for most of my life, treated with Synthyroid. I took Prednisone for approximately 1 1/2 years For the sarcoidosis resulting in secondary adrenal insufficiency(which I diagnosed myself and requested the testing) The results of the ACTH stimulation test revealed my body does not produce Cortisol which is life sustaining. I take a maintenance dose of hydrocortisone for the rest of my life. I developed glaucoma and cataracts which I’m being treated for. I have also been diagnosed with fibromyalgia for which I take Gabapentin nightly. I have IBS and take Prilosec 2x daily. I also take a statin. I recently had dental work done and mentioned to the doctor that I’ve had a terrible taste in my mouth for quite some time-he ruled out my teeth as a cause. For awhile now, I’ve been having a “buzzing sensation” in my lower back radiating down my legs to the floor. It is constant and relentless. I’m having a partial knee replacement soon as I am in severe pain that puts many limitations on my quality of life. I have already had bilateral total hip and a partial left knee replacement. I suffer from migraines, carpal tunnel that comes and goes, occasional right-sided chest pain that mimics heart attack symptoms but heart related tests show it’s not related to heart function. I’ve have a hydroscan that revealed a “sludgy” gallbladder. Quality of sleep is non-existent with all the pain I have. I also have sleep apnea and narcolepsy. My coordination and sense of balance is off kilter. And on top of all this, I suffer from panic anxiety syndrome for which I take xanax! I find when I am experiencing increased pain levels I feel more vunerable which in turn sets off a panic anxiety attack. I do very little socializing other than the gentle water exercises I do for my osteoarthritis. I take a muscle relaxant at night to assist sleep. The doctors are no longer giving out pain medications because of the constant abuse of them so that leaves me to suffer. I can’t take NSAIDs because of my stomach issues and I relapse to anemia. I have a lot of the symptoms people describe of MS. I don’t know how to approach my doctors about testing for this!

    • Kay says:

      Hi Shawn, remember that doctors are people just like
      us. Write down your symptoms
      and when you see your doctor show him/ her your questions. If your doctor ask you more about your symptoms you may have been blessed with a good doctor. If the doctor doesn’t listen or dig into your issues, move to next doctor. I have a wonderful doctor and she has been with me 8 years. I have many things wrong with me. If I didn’t have the best husband on earth and best daughter I think I would probably have given up by now. I have never been tested for MS, Parkinson’s etc.I am very blessed. I used to be so social but now I’m at home, tired, going through many things and on in oxygen 24/7. I just turned 58. All of you are so brave. I’m going to pray for each of you to be able to get your lives back and enjoy them again. God Bless you all!

  40. Ricky Edwards says:

    Hi, I have had secondary progressive MS for 11 years and if i can give you guys any advise it would be to take Curcumin Tablet every day. As it is an anti inflammatory It calms all symptoms down and in my case stopped bowel problems in its tracks. I have read that there are now trials to look into this.

  41. Karen Kincaid says:

    I have been following Swank diet which helps me, and I take vitamin B-Complex, vitamin D3, turmeric, magnesium malate. I don’t eat gluten or dairy, or sugar. And I try to lower salt intake. I take 2 tbsp flaxseed oil each day. I don’t eat processed foods with chemicals, and try to eat organic foods. I eat a lot of salads, lots of greens and veggies. Sunshine in the mornings kicks off vitamin d absorption. All these things help a lot with ms symptoms. I don’t take meds. I have ms hug and spasms when stressed, and I use Hylands leg cramps ointment which helps. I have had dx of ms for 35 years, and still walking. Fatigue and vertigo is a problem if I don’t get enough sunshine. This article is so important, good to know such odd symptoms are not “all in my head”. Do what brings you happiness, as that is a very healing thing.

  42. Mickey says:

    Thank you all for your candid comments. I’m very newly diagnosed and scared to death. Having been disabled with a back injury as a result of being a caregiver to my mother in law who had Alzheimer’s
    in 95′ amongst a list of other health issues I’m already pretty much home bound. I gave up driving in March due to severe nerve pain which I believed to be from my back issues. I’ve been sleeping in a recliner for years now already but the leg cramps and foot pains and especially intolerant to noises, lights, changes in temperature really set things in motion. Living day to day in a chair in a dark room lends itself to depression. I Thank God that I have a Perfect husband which helps me not be as depressed as most. Interestingly enough that I’ve had most all of these symptoms for years but just thought that it’s part of growing older being disabled. The hearing voices that you can’t make out what is being said along with seeing floating orbs I generally experience in the shower and late night when the house is quiet. I’d just tell myself that it’s my Angels letting me know that they are close. I gives me Comfort rather than upset me like it did when it started in the early 90’s. It started like the sound I’d hear when my grandfather would listen to the ballgames on his radio after church when I was little. That is a favorite memory of mine of our time together. What I’m trying to say is I take some of these mild irritations and pair it with a warm memory and it helps me most of the time. Short term memory works for me in positive ways at times to. If something or someone upsets me I’ll be done forgotten about it later. My daughter is the one that I worry about the most, being an only child. She gets easily upset when she has to keep repeating herself to me about events happening. Now that there’s a clear explanation for my memory loss she’s adjusting slowly, BLESS her heart. I pray that we all (caregivers too) can deal with our burdens with faith that God has a plan for our lives and to HIM be the Glory! Again Thank you all for the tremendous support and information that you are providing here.

  43. Robin Tiedeken says:

    I came across this in work. I am so thrilled to have my feet symptoms validated by others with MS. I have exquisite pain most of my awake hours and continuous break thru pain when I try to sleep, despite a hefty cocktail of meds to try to tamp down the pain.I am especially sensitive to heat and humidity .I feel so weak and sick and hopeles. My internal temperature regulators are basically non existent. I feel sick all the time. The fatigue has made me a highly non functioning person who can not drive or walk more than a dozen feet. Balance, number dyslexia,cognitive retention and depression have control of me although I feel like I am always fighting to be positive and look at the glass as half full. It’s exhausting. I was a type A, highly functioning ER nurse and supervisor of an infusion suite for a private practice until 2009. First symptom was extreme foot pain. Has never gone away. Sorry to sound miserable. The meds have never helped. I have not tried any oral meds or interferon’s but I have been on the rest. Presently getting ocrevus every 6 months. No improvement. Symptoms seem to get worse on a monthly time schedule. Has anyone ever felt like there is a trickle of water running down the back of your leg but when I stop and check it is dry. Or discomfort from the shower running down over your body? Or feeling like you can feel every fiber of your pants and it doesn’t feel good? The spasms in my large and small muscles is a topic for another time. I feel like I have said to much already. No one understands,remembers or basically cares about my illness because i am rarely good company due to the a fore mentioned symptoms. So much so, that I don’t like to be around myself!!! Thanks for lending an ear. Robin 60 yo

  44. Judy says:

    I need some feedback. I am wondering what some of you think of my symptoms. I am the kind of person who ignores my symptoms until I cannot do it anymore and that’s where I am now. I have always thought of myself as “tough” and a “go getter.”
    I have been falling for over 10 yrs. Much worse these last 2 yrs. How do you trip on a level floor with nothing in front of you? I have fallen going up steps. I am a nurse practitioner. I worked as an RN from 1981 to 1990 when I had back surgery due to a huge herniated disc. Did well for 3 yrs working in the operating room until ‘93 when I reinjured my back and was told I would never work again. At this same time I had been having these “muscle jerks” which worsened. I saw a neurologist who did an EEG which came back abnormal and he treated me with klonopin which stopped them. I have been on it since then and it works great. If I miss more than one dose my arms and head will jerk. After 2 yrs on total disability I just had to do something. So I went back to school to become an NP which I dearly love. I opened my own practice on 2016 after working in rural medicine for a few years.
    For the last 2 yrs I have become very ill. Started with urinary problems. I am now in Stage 3 kidney failure and no one knows why except to tell me it’s probably autoimmune. I get these weird symptoms now which I desperately need help figuring out what they are. You all are the experts on your own bodies. That’s how I treat my patients and why they beg me not to quit working.
    I get this tingly sensation all over my body. Like you get when you rub Vick’s Vaporub on your skin. Then I get this super hot sensation on my skin. Mostly on my back. But it has occurred all over my body. You know how an iron feels when you turn it on? It heats up and you put your hand up to it. I can put my hand up to my neck and back and it feel just like an iron heating up. I have heart palpitations. Beta blockers have helped. But I still have them. Just not as severe. And my BP sometimes shoots up when the heart palpitations and sweats occur. I have been ready to walk out the door heading for the office and the heat and sweating starts. I took pictures. It literally looks like I walked into the shower and drenched my hair and clothing. It’s so uncomfortable.

    The falls are the worst. I can be walking across a room and fall. Level floor and nothing in front of me. And I can’t catch myself. It’s like I have no reflexes. So I hit the floor or concrete hard. I actually think I have cracked my kneecaps or patellas at least once. My shoulders have been sore for a month after a fall. These falls are hard when you can’t catch yourself or break your fall.
    I know I sound crazy and this is a lot. But it’s getting me down. I am tripping over words. Walk into a room and can’t remember why I went in there. Joint pain and stiffness that keeps me from quilting. The one thing I love to do. I keep chalking all of this up to old age as I turned 60 today. But I am not the same person I was 3 yrs ago. I am literally a different person. I don’t want to leave the house. I am afraid to work in my flower beds because I am afraid of falling. What forces me out of the house is my job. I decreased my schedule to 2 days a week. I start at 10am. By 2 I am ready to collapse. But I force myself to keep going til I see everyone and get done about 5-6pm. But I am in bed the next day recuperating. Sometimes I just go into the bathroom and cry then come out and finish seeing patients.
    Does this sound familiar to any of you?

    • Tracy says:

      Parkinson’s or Levy Body Dementia. My mother in law got left body and she had tremors and unexplained kidney failure that came and went with her dementia. Also affected her feet. She would drag them when she walked, only we didn’t notice any of these things until she was 20 years into the first signs.

  45. Branden says:

    My wife has been reporting that she gets a strange sensation when she get stressed. She feels like a puffer fish that is ready to send out its spikes. She said that this needle feeling follows the spine. She has mouth and gum problems that no one has been able to figure out. She has had one tooth pulled so far. She experiences anxiety where she feels like she is being constricted and cannot breath. It comes across when she is stressed and sometimes by itself. She also reports being exhausted all the time. Cannot seem to feel rested. She has fallen several times in the last few years she attributes to clumsy but now I’m not sure. We have been to countless physicians and we have been at this for a few years now. I am curious about if other MS cases experience the puffer fish sensation( as she calls it)?

  46. Dawn Hall says:

    I was looking for support, I have recently had a new strange sensation and wondered if anyone has ever had the same.
    The right side of my body, starting at the very center of my stomach and wrapping around the right side to the very center to my spine feels completely numb, but at the same time had pain and tightness,
    And even at times has a sensation of being wet.
    I will find myself touching my clothes because it feels like
    I’m wet. This I know all sounds so very strange,
    Has anyone every heard of such strange sensation?

  47. Mark says:

    My doctors, plural because we are still looking for one to make a diagnosis, are confused about my symptoms. I will list them.
    Numbness in feet, especially around my toes ( feels like my sock is balled up)

    Sun burn sensation on feet, front of shins, inner thighs, hands, and a strip up my forearms.

    Scalded tongue sensation.

    Vibration in my pelvis that sometimes lasts for hours.

    Blurred vision.

    Annoying muscle twitches in arms, legs, feet. They last for days.

    Severe ear canal itching…very annoying.

    Thwopping and ringing in ears that lasts for weeks.

    Problems swallowing, so I get the punched in the chest feeling after drinking liquid trying to make food go down.

    Vertigo to the point of falling. I bloodied my face while working in the attic.

    My left foot postures and arches to the point of cramping, often.

    Bladder infections, that my doctor tried on multiple occassions to diagnose as “infidelity,” until I invited my wife along on my next office visit. Then my doctor dropped me as a patient.

    Bladder will not empty completely, so I have been painfully shoving my fingertips below my belly button until my bladder is emptied. It is painful, but I have been doing it for years now and no more bladder infections!

    Last Christmas I could not stand up straight if I sat, even if only a few minutes. I shuffled everywhere we went like an old man.

    During the same stretch, I could not get up and walk to the bathroom at night. My muscles were so stiff I literally considered wetting the bed. It was more appealing than falling on the tile floor.

    My last three doctors are confused as to what is happening to me. One suggested, I am faking. Another, as I mentioned earlier, bravely diagnosed my bladder infection as infidelity. Another sat and thought about it, stating out loud, “This sounds like a mental problem.” We no longer use any of them.

    Recently, the ear canal itching, ringing, vertigo, blurry vision, burning, and needles are all back. I thought my severe chest cramping that wakes me from slumber was a heart attack at first, but have since discovered that it is the cute little MS hug. So we are on to doctor number four on our 22 year journey.

    I have always relied on humor and sarcasm my entire life. I honed those skills as an abused kid. However, time and pain wear you down like wind and water wear down mountains. It gets especially difficult when inept doctors are better suited at humiliating the patient instead of helping.

    My favorite humiliating moment was my colonoscopy doctor walking into the room moments before starting my procedure and telling me that my doctor was correct in her diagnosis, that my bladder infections are caused from infidelity. I thanked him for his concern, and I then politely allowed him to insert a camera up my backside.

    The reality is that the severe constipation and bladder infections were early indicators of MS, or so I believe when placed into the context of my other ailments, as I am still waiting for a diagnosis at age 49.

    My only question, as humiliating as it is, is this. Does MS tremors cause anyone to experience an unwanted emission? The tremors are almost like a buzzing cell phone at times in my pelvic area and it causes an embarrassing condition. Thankfully it doesn’t happen often.

    • Alexandra King says:

      I had the vibration in my crotch off and on for years. I told my neuro who was visibly embarrassed by my statement. I’m currently having a heavy head issue. It feels like my head is too heavy for my neck also having spasms/pain in my neck. RRMS for 13 years SPMS for the past 3 a total of 16 years. Currently taking Mavenclad and really like this Med.

  48. Erin says:

    I’ve been having a wide range of symptoms that don’t make much sense. It took me over a year of suffering extraordinary fatigue, like falling asleep on the toilet fatigue, severe stiffness, and pain, extreme swelling, numbness, dizziness, getting up 5 times a night to use the bathroom, then not being able to empty my bladder, not being able to sit for more than five minutes bc of hip pain. I was having cramps in my feet, ankles, legs. I was very weak and having a terrible time walking, very shaky. Started having heart palpitations, shortness of breath. The worst part back then was the pain I was having in my abdomen. It would hit randomly and feel like I was being squeezed to death and my ribs we’re going to tear my guts out. I would have to lay down and hold onto a pillow, sometimes I managed to cry, but mostly I couldn’t even do that the pain was so intense.

    I finally made it to a Dr who I thought would help but the very first visit she said I had too many things wrong with me and squeezed my joints, then proclaimed I probably had fibromyalgia. Four months later I began having severe numbness on my right side with intense pain like I was being stabbed with electrified poker, and fire ants we’re crawling all over my body, biting me. I felt like there were heavy ropes wrapped around my chest and stomach and breathing was difficult. I tried to tell my Dr but she told me I was being hysterical and told me I was overly sensitive and that she would increase my Cymbalta to 90mg. Then she told me to come back in 2 months when I was stable because she couldn’t help me when I was emotional and that it wasn’t her job to discuss my mental health, that I needed to see my psychiatrist. I was emotional because I am in so much pain and I could hardly walk and I was being bitten by imaginary fire ants!

    That was in April. Now I can hardly walk, my feet are almost totally numb. I’m having cramps so bad in my ankles I can’t bend them. I’m on the verge of incontinence and can barely make it to the bathroom 15 feet from my bed bc I’m so stiff. I didn’t even mention all the trouble I’ve been having with my memory and concentration. About 2 months ago my eye started hurting worse than anything I’ve ever felt like it was getting dug out of the socket. Urgent care diagnosed a sinus infection and prescribed antibiotics and a steroid. The next day my eye still hurt but I could walk. I wasn’t as stiff and I could walk! I know I don’t have fibromyalgia because that wouldn’t respond to steroids.

    The steroids stopped working 5 days after the course was finished. Now I have to use a cane to help me from tripping or walking like a limping drunk. I’m 37 years old. My 9-year-old is worried sick and sad that his “mama is crippled”. I don’t know what’s wrong with me and I’m terrified that no one will believe me. I’ve gained weight since this started and Drs are quick to blame everything on the news to lose weight. I get it, but how can I lose weight if I can’t walk and I’m too sick to eat?

    The sad thing is that my feet went numb more than ten years ago and I’ve been suffering dizzy spells months on end since then too and when I told a Dr then, he said “Peripheral neuropathy.” And when at age 23 I began itching with no cause whatsoever, he commented on how it was related to my nerves. Yet no tests were ever done.

    I need a doctor who will believe me and do the tests, investigate what’s going on with me. They always act like I’m trying to get pain meds. I Don’t Want Any Pills! I want to be able to WALK and play with my kid. I’m so sad and frustrated. I don’t know what to do ☹

    • doreen says:

      Have you checked into MCAS? That diagnosis explains everything you’re going through. I had a host of symptoms that seemed related to every type of specialist out there. No one could diagnose me. It started when I was 27 and I was JUST diagnosed by a very smart hematologist who understood that if I had Lymes (I’ve been treated for it 3 times already!!) and they didn’t check for co-infections then he had better check. He found Lymes again (meanwhile realize I’m so debilitated that I’m bed bound by now so there is no way it was a new infection. The last doc gave me a z pack or two and that was it to treat the Lymes so it never went away!) as well as Bartonella (cat scratch fever – either from the tick or my cat) and MCAS, which could be why you’re itching, in pain, legs aren’t worthing properly, etc.!! Check for a good Lyme doc in your area (make sure his reviews are good and REAL!) and ask them to check you for Lymes and all co-infections, including MCAS. MCAS is NASTY! It can affect every system, every bone, muscle, nerve, gland, etc. It is horrible but often goes undiagnosed for years! It can make you gain mad amounts of weight in a very short period of time without excess eating from a trigger. My trigger was steroids!! So mad amounts of weight gain and no ability to walk right now. Not a good combination if you’re trying to lose weight! Anyway, good luck. I hope you find out what it is. I think you might be better finding a new doc too. You need someone that will HEAR YOU and not judge! Remember, your employing them – not the opposite! Take back your power and recognize that online reviews are really helping people decide where to go to the doctor. Let them know you’re planning on posting reviews on all of the sites (Healthgrades, etc). See if that isn’t enough to help them to listen better! Btw it often mimics many of the MS symptoms but there are way more than just those. That often leads a neuro to say they can’t diagnose ms. But sometimes it’s just MCAS (Mast Cell Activation Syndrome) and sometimes it’s both. But when it’s both they have to first diagnose and treat the MCAS and then reevaluate the MS. But at least you know then what you have and how to treat it. Neither of them are presently curable but definitely treatable. Best wishes!

  49. KM says:

    The subject says ‘7 Symptoms…’ I see body reacting to weather and body reacting to dental work and then reader comments. Where are the other 5 symptoms? Or am I just that bad at math?

  50. Norma Burkhardt says:

    I’ve had MS for 23 years. Never officially diagnosed by a neurologist, he wanted one more test to come back positive. I had gone through a Lumbar puncture which came back negative at that time, until my new internist said I had MS in disgust at the neuro’s lack of action 6 years ago in 2013. I became bedridden in ’97 a year after the onset of the illness and in ’99 had to go on oxygen 24/7. Because of the severity of my condition, I have never been prescribed any of the MS drugs. I have seen over the years a world renowned MS specialist, and he too failed to diagnose me, saying the lesions on my brain did not look like any MS lesions he had ever seen. They looked more like headaches or strokes. At this time I was in my mid to late forties. I am now 72.
    I have been mostly status quo with periodic flairs until 18 months ago when my MS started going haywire. Flair after flair with increasing intensity this past month. My brain became more involved and started doing contortions. When watching a video of a lecture online, the speaker’s head changed shape into a comic shape. It didn’t last long and would resolve itself. It happened several times. Did a real number on my head cognitively as I was going what??? and couldn’t get my head back to thinking normally, trying to convince myself I wasn’t crazy.. that I hadn’t seen what I had just seen. Then early this morning at 3:30am I was reading a book and this pressure starts in from my head to the tips of my toes, and this has been starting to happen a lot lately. I have found that Aleve stops the pressure, and so I took one, but before it could take effect the pressure grew to where my face swelled to twice its size. This is the first time this has happened. Is this normal for MS??

  51. PYTinkerbell says:

    I’m literally in tears reading all these and seeing I’m not alone. I can see a definite correlation between MS and dental problems. My teeth started going downhill after a major MS progression in 2013 that required oral surgery. 8 teeth pulled, graphs and implants. I’m still having dental problems with my remaining natural teeth. I was diagnosed with MS in 2005 and suffered a bought of TN in 2009. I still have episodes from time to time. I’m having the MS chest pain right now, that’s how I found this article. I’ve always felt the best on a 65-70 degree day when I get a little sunshine. I had half my thyroid removed in ‘04 so I don’t handle hot or cold well at all. But, again it’s a thyroid connection…. and I’ve always had the other weird symptoms listed above. Constant nausea, debilitating fatigue, vertigo, pain, cognitive impairment, and showers are the worst… sometimes I get so sick in the shower I have to get out with shampoo in my hair and lay down until I am okay to get up and rinse off. People never seem to understand how amazing it is that we got out of bed today, let alone accomplish anything else. If we make it out of bed, that’s a great start.

  52. Sam Wheeler says:

    First of all, great to across so much positivity here, despite the struggles against all of us. Thanks for sharing your stories, means a lot to anyone experiencing similar issues.

    I have been experiencing a lot of MS symptoms including cognitive (memory, difficulty to focus, and foggy mind sometimes). About 4 months ago I started having very mild headache for 8 weeks non-stop at the lower left side of the head. The cramping of toes and occasional pins and needles, and muscle stiffness in the neck. Also ears get muffled and ring sometimes for a few seconds and its gets better then. Finally in the past 6-7 weeks it has been hot toes, randomly going from one foot to another and sometimes to hand palms and tongue. Finally had my MRI done and they found 8-9 White Matter Hyperintensities, which my neurologist says based on the morphology, they are just typical aging lesions and not MS. That’s all I got and he had no explanation for the symptoms. Basically I am left helpless as my GP says he cannot do much and my neurologist would not see me for another 6 months. Also not possible to get a second opinion when you have already been with a neurologist. Anyone else going through this and narrowing down on a diagnosis?


  53. Leanne says:

    i have had burning in one toe….stabbing at the bottoms of my feet. One of my eyes becomes fuzzy now and again. I went through a period of hearing music…. music i didn’t even listen to or know but it would play out like it was on a radio. I have been jolted by a loud bang that sounds like it is from the outside but it is just in my head. I have had vertigo for months, ringing in my ears and they feel like they r leaking? Twitching at night and losing my words… Memory bad. Pain everywhere until i started taking Cymbalta. Over nerve sensation from my knees to the bottom of my feet and my elbow to my finger tips that get triggered my anxiety or fear. I was loosely diagnosed but still waiting on a an MRI…. what do u think? Is this MS? Thanks for any imput

  54. Renauld Clare says:

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  55. Ruben Thomas says:

    Hi everyone😊 Ok…. I have a interesting few days behind me😊 Just came out of hospital 3 days back after 6 days of being COVID Tested, MRI Scanned and Lumber Punctured. I’m currently awaiting my Lumber Puncture Results to return. Neurologist says that the Brain MRI show clear signs of MS. All started with me going near blind on my left eye 😉 I’m obviously reading a lot at the moment and just wanted to say, though I don’t know all that much about all of this yet, you guys are awesome 😎

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