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Lesser Known MS Evils

Lesser Known MS Evils

I love living in a world where I can Google anything, and instantly have an answer at my fingertips. It especially comes in handy when you are living with a disease like MS, which loves to throw curve balls at you constantly. You can turn to the internet and find pages and pages of information about symptoms, medications, and even browse forums of other people living with MS trading information and experiences.

Almost every informational MS site you visit has loads of information on the common symptoms like numbness and optic neuritis but what about the other lesser-known evils of MS? You may find a stray article here or there, but there simply isn’t a lot of information on some of the rarer MS symptoms. Suddenly even in a sea of endless information, you may find yourself stranded on a seemingly deserted island left wondering- “is this an MS symptom” or “am I the only one who experiences this”?

I think we should start a conversation about these rarer issues, so I went ahead and started a list for us. Some of these are known to be associated with MS, while others are not so clear-cut. My hope is that you will all share your experiences, and let someone else out there know that they are not alone.

L’hermitte’s Sign

Named for the French neurologist Jean Lhermitte, this is an electric sensation that runs down the spine when the head is bent forward. Sometimes the sensation also goes into the limbs, and it ranges from feeling like a tickle to an extremely painful phenomenon.

Glossopharyngeal Neuralgia

A lesser known relative of Trigeminal neuralgia, glossopharyngeal neuralgia is irritation of the ninth cranial nerve. It causes extreme shock-like pain in the back of the nose, throat, tongue, and ear. It can be triggered by chewing, laughing, coughing, talking, and swallowing.

Pseudobulbar Affect (PBA)

Sometime referred to as “emotional incontinence”, PBA is characterized by inappropriate and uncontrollable episodes of laughing or crying. A person with PBA may cry even when they don’t feel sad, or laugh without having any reason to.

Itching (Pruritus)

It’s not uncommon for people with MS to have funny sensations like tingling, numbness, burning, or pins and needles. Itching is considered a more rare form of these funny feelings, known as paresthesias.

Hearing Loss

One of the most rare symptoms of MS, hearing loss is usually caused by a lesion in the brainstem that affects the auditory nerve which is responsible for hearing.

Seizures

People with MS are about 3% more likely to have a seizure as a result of brain lesions. It is important to immediately seek medical attention, and alert your health care provider if you think you have had a seizure.

Uhthoff’s Phenomenon

A temporary worsening of symptoms that occurs with exertion or elevated body temperature which improves with rest or after cooling off.

Problems with Speech

Speaking is a very complex task that requires the input from several areas of the brain. MS lesions can cause slurred speech, and can alter the tone and cadence of one’s voice. Some people experience a very nasally voice, which makes them sound like they have a cold while others have to take abnormally long pauses between words or while talking.

Tremors

Tremors, or shaking movements, can occur virtually anywhere in the body including the hands, legs, vocal cords, and eyes. They can lead to difficulty performing fine motor tasks (like eating, drinking, and writing), visual difficulties (blurred vision and/or dizziness from jumpy eye movements called nystagmus), difficulty speaking, and difficulty swallowing.

The “MS Hug

Although this symptoms sounds kind of warm and fuzzy, it’s anything but. It is caused by spasms of the intercostal muscles, located between the ribs resulting in a squeezing pain around the torso. It is sort of like a full body charlie horse that can range for being merely annoying, to extremely painful.

Trouble Swallowing (Dysphagia)

Although it is more common with advanced stages of MS, trouble swallowing can occur at any time. This may cause coughing after eating or drinking, and can even lead to choking.

Hyperacusis

Hyperacusis is extreme pain caused by everyday noises. A person can suddenly become extremely sensitive to everyday noises, leading to a fear of sound. This is rare, but understandably can be an extremely isolating symptom.

Sensitivity to Cold

Sensitivity to heat is a very well known and talked about MS symptom, but for many people extreme cold can also cause temporary worsening of symptoms.

If you experience any of these symptoms, talk to your neurologist. There are treatments and interventions for each one, so please don’t suffer in silence.

What else would you add to the list?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • zonafeyed
    4 months ago

    I have almost all of these symptoms. Lately I have started to have an achey pain in my throat. Almost like my throat muscles or voicebox is tired. Sometimes it feels like a stabbing twinge in my throat or a muscle spasm also. I work full time as an insurance agent/banker on the phone. Sometimes my calls are 3 hours long & I can barely speak at the end so I use a ton of sugar free dough drops. I have started having regular jaw pain & muscle spasms in my jaw & face. People can’t see them but it’s like an all day Charlie horse in the face. Very painful. My left hand feels weak & shakes when holding even light items. My legs feel weak & a hey & my hands & feet go painfully numb from staying in the same position for more than a few minutes. I get strange burning hot sensations all over my body. Dizziness, euphoria, urgency, ringing in my ears, hard to hear, & sudden stabbing pain all over. The worst are the trigger points/spasms deep in my back. Tens machine helps sometimes if I use it on max shock setting for hours. Unfortunately my husband does not believe me. He expects me to keep working. And my neuro is not tracking anything to prepare for disability filing because he sees me pushing past the pain & assumed I’m fine.

  • Mike H
    8 months ago

    Epstein-Barr virus….something that almost all of us have been exposed to & have in us, even since childhood, which never goes away. It stays in us. Levels can be low & never bother some people. Symptoms can mimic MS. Read about it…… I know my levels are off the charts. Normal is below 18 I think it is. Mine are 625. Has made me think twice about my last 16 years with “MS”.

  • Etosha
    8 months ago

    I never thought that MS would include such a very large spectrum of symptoms. I just recently experienced once I was overheated a sharp spasm in my back if I move a certain way once it hits like a contraction. Once I rest and cool down it goes away. Ive also been experiencing gluten issues. I’d previously stopped mayo, ketchup, salad dressings and a few other things some years ago because they were irritating my me and my stomach. From headaches, fatigue, and irritable mood swings turns out it was all apart of the MS that I was just diagnosed with in February.

  • drgnldyblu
    1 year ago

    My diagnosis took a long time. Have had symptoms since I was in my late teens. I also have Graves, which took the MS diagnoses even longer. I eventually found a doc who would not give up til she found out what was up. After numerous tests (which included, to say the least, a MRI and freaking spinal tap), we got a diagnosis. Right now it is considered RRMS. Powering through!!!

  • tfab
    2 years ago

    This is almost too silly to post, but, when I am tired, or having a few bad days, I get this sound in my ears that seems to relate to when I move my eyes. The best way to describe is its like being able to hear my eyes move.

  • GmaJo9
    8 months ago

    I realize this was from a few years ago, but I have to say that I experience that also. I called it “sand in my brain” for a lack of a different explanation! It comes and goes, but when it is here, it is quite annoying!

  • Amiracali
    3 years ago

    The speech symptom was the one that led to my diagnosis.

    Brain fog is frequent, as is the fatigue.

    I have switched to a predominant organic diet which has helped alot, if only I had the energy to make those lovely super green salads I love.

    Vitamin D deficiency wasn’t mentioned In your blog post, and I have spoken to many who have difficulty getting their levels up. I was at a 13 on diagnosis in 2014, and am now at 73 due to a raw Vitamin D I have been taking.

    My addition to that would be a couple of things:

    1. I do have spasms but can’t tell if they stem from my two back surgeries or not

    2. I have had pain the past two months where it seems all my muscles are hurting.. The first month I got a steriod infusion and now, I’m just not sure.. I started focusing on my magnesium and pottasium levels by eating foods rich in them and adding Gatorade back in my diet, and it has helped.. But want my energy back to get some exercise, between that and the pain it is quite difficult to walk some days.

  • kicknMSback
    3 years ago

    And what about petechiae when the blood vessels in the body deteriorate and start leaking? MS messes with the process that maintains the Integrity of the vessels and that is why more people with Ms are having Strokes. You can tell you have this issue by the amount of reddish rashy type moles all over your skin and sometimes the fact that you look like you’re overheated even when you’re cold. I had a dermatologist tell me that it was hereditary but the fact that I am continuing to get more and more as my Ms plays a huge part of my life I’m tending to think that it’s a little bit more than just hereditary.

    And the whole over-sensitized feeling from taking in all of what the environment sensory information is throwing at you can be a processing nightmare for a fatigued brain and body to handle. I call it a body migraine.

  • afizmyf8
    3 years ago

    Why are people not talking about HSCT?? Hematopoietic stem cell transplantation (HSCT) is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood. I have an identical twin brother that was diagnosed with MS 11 years ago and it has become more debilitating every day. He found out about HSCT and has spent over a year researching it. HSCT has a 86-90% success rate of irradiating MS forever yet the big pharmaceutical companies do not want you to know about it and they do not want the FDA to approve a procedure that was confirmed successful in Colorado in the 1990’s! The drug companies don’t want this procedure approved because they would lose BILLIONS of dollars in revenue every year. HSCT needs to be made known and pushed to our legislators. By brother went through HSCT in February of this year and is now walking without the cane that he had been walking with for the last 5 years!

  • Blessed
    3 years ago

    Wow This must be extremely expensive since the FDA will not approve it – hence the insurance companies most likely will not cover it. Do you know how much this costs?

  • gparado
    3 years ago

    Thank you for the informative article. My most annoying symptom is the feeling of heat in my left hand, arm, shoulder up the left side of my neck to my ear. It feels like a heat lamp is constantly on just to my left. It’s the strangest thing. It started out as a loss of cold sensation: I grabbed an item out of the fridge one day with my left hand and thought it wasn’t cold yet. Then I touched it with my right hand and realized that it was actually really cold. My ability to feel cold has returned only to be changed into the heat lamp phenomenon.

  • mbrhapsody
    3 years ago

    i’m so glad you mentioned glossopharangeal neuralgia as an m.s. symptom. I was diagnosed with m.s. in 2005. I was hit with the glossopharangeal neuralgia pain for the first time while driving home from work last summer. I yawned, which triggered it. The pain in my neck/face and tongue was so excruciating that I nearly drove off the road. I had no idea what it was! It happened several more times in the next several months before I thought to mention it to my neuro. It’s really very rare in the regular population but quite common in people with m.s. Thank you for the post.

  • karenredhead
    3 years ago

    Sometimes when I stand next to the kitchen counter I get a sensation of feeling very short (I am 5’6″). Also feel water dripping on me when there is not a drop in sight. And insect bites. My feet vibrate like my cell phone. Sometimes my brain hurts. I can scan short articles but can no longer read a book and I was a voracious reader. Trigeminal face pain and sudden tooth decay. Share activities and events like reciting a list. Cannot remember or expand details. My artistic abilities have greatly improved as has my vocabulary. I use words that were not common to me. I leave 0s off numbers. Bad when writing checks. Also see letters in words in wrong order. FATIGUE. Not satisfied with my neurologist so after 10 years with him I went to Cleveland Clinic. Neurologists need to read these pages. Thanks for your post

  • Michelle T
    3 years ago

    I cannot find any correlation to dental pain, but I am certain it is related.
    After suspecting MS for over a year and before beginning my journey to diagnosis in May 2015, I set about the road to fixing dental issues that has come on suddenly: losing caps, sudden deterioration of the stability of other teeth. I ended up having 5 extractions; 1 of which had rotted and fallen apart beneath an intact crown, the other 4 all had cysts at the ends of the roots. This was the beginning of my journey. Fast forward a year or so and we completed the final two reconstructions on rear molars on my left side. The pain never went away. I ended up with a root canal on the tooth in front of these two molars. Still no pain relief. My dentist and I tried everything and had exhausted all methods to correct it. Multiple visits to the endodontist yielded no new issues, but still I have pain. I began the neurologist journey right around this time. Then the muscles running vertically down my neck contracted so hard it pulled the top of my head to my shoulder. It took over an hour to get my head upright again doing light stretches against the contraction and pain. It left me with an inability to speak for the remainder of the day. Two days later, my lymph node swelled up and became brick like, forcing itself in my tounge. Another visit to the endodontiost, no new tooth issues, still have pain. Prescribed a 5 day steroid which did the trick (for the most part). I receive MS dx mid October. I get on baclofen, and finally begin the reconstruction for the root canal done in May…slowly because I still have pain all along my jaw, ears, into my face, across my thraot, affecting vocal cords. November, I have a tooth cleaning and later that month begin Tysabri. I just had another cleaning (quarterly periodontal maintenance to prevent losing more teeth). The same hygienist cleans them and I tell her up front about my MS, extreme sensitivity to anything cold (water scaling is done during these) to the point that I cannot use mouth rinses due to the stabbing pain and the water I rinse with has to be on the warm side or severe pain results. Food cannot be too hot or cold either. I use sensodyne toothpaste and it helps but not much. Her comment at the end of the visit was that my gums and mouth in general was not near as inflamed and swollen as my last visit.
    I would like to find corolations between dental carries and MS, because I cannot find anything out there showing any dental issues can be related to MS. My gut is telling me these issues I’m having are related, the same gut that told me I had MS in the first place, and was right…dx: RRMS high levels of damage in majority of cervical and thorasic spine.

  • Blessed
    3 years ago

    I also think MS has something to do with tooth decay. I have had too many root canals and extractions to the point where I thought my dentist was being dishonest ($$) about the condition of my teeth. I got a second opinion only to find out that my dentist was being truthful. I brush 2-3 times a day, I floss twice a day in addition to using a WATERPIK three times a week. I also use mouthwash regularly… I do not think there will ever be enough scientific evidence to disprove the increasing number of symptoms that MS patients report simply because we are all different and it has been written that MS affects its hosts non identically. I have lived with MS for 25 years, which is half of my life and nothing surprises me with this anymore. With that said- MS causes tooth decay and other dental problems

  • karenredhead
    3 years ago

    Before diagnosis, I had trigeminal face pain. Dr. suggested I see dentist. Just several months after annual o.k. check up, I needed an extraction and a root canal. The extracted tooth was decayed all the way into my upper jaw. Dentist was able to save other tooth with root canal but 8 years later had to be extracted also. Anyway, I still had/have face pain. I started prozac which does help intensity.

  • Kate
    3 years ago

    My sister was dx in 1996. She also has IBS. For about the last year, she has had a debilitating pain.. deep in her abdomen.. that can take her to her knees. Can’t stay in bed. Has to stretch out in recliner with heating pad. Can last from 1 hour to 2 or 3 days. Had an MRI – nothing. The diagnosis: It IS MS related. It’s a raw nerve end. And there is nothing they can do for it. She has a family doctor & MS doctor. They live about 1 hour apart and never seem to communicate with one another. My question: has anyone else experienced this intense abdominal pain? And if so, what do you call it? She was told it was not MS Hug.

  • karenredhead
    3 years ago

    Please be her advocate and insist that doctors communicate about treatment. Or find new doctor as I had to do.

  • Kelly McNamara moderator
    3 years ago

    Hi Kate,

    Sounds like your sister has a great support system in you. If the pain your sister experiences is new or worsens, we always recommend having her talk with one of her doctors.

    Best,
    Kelly, Community Manager

  • PeggySargent
    3 years ago

    Thank you for this list. I needed something more like this after I first got diagnosed.

    I also have times when my feet and hands are physically hotter or colder than the rest of my body. I have mentioned it to my doctor, although it doesn’t happen all the time.

  • rmdanielsom
    3 years ago

    Stephanie,

    Nice list. As someone with PPMS and who now relies upon a power wheelchair to get around, I have two more symptoms that you can add to this list. Both of these are incredibly frustrating and painful, no pun intended.

    1) Complete sensation from the ends of my hair to the soles of my feet. This means I feel every wrinkle in my pants, chair cushion and socks. This also means I feel every pressure sore that I get from sitting in that wheelchair until the sore heals.This is a symptom that everyone finds hard to believe. After all, one of the symptoms of MS is the loss of feeling.

    2) Allodynia. This one was diagnosed by my Physiatrist, not my Neurologist. For those who do not know, Allodynia is a hyper sensitivity to ANY stimulus. What Allodynia looks like are muscle spasms that involves the entire body. You do what is called “planking”; meaning your whole body goes rigid and if you were standing up you would fall over backwards; you spasm so hard that you try to touch your heels to the back of your head; breathing is not a happening thing.

    The stimulus that can start these spasms is literally anything from a sound, taking a deep breath, having someone touch you (hugs, kisses, shoulder pat/rub), attempting to move or thinking about moving, clothing moving across your skin, or shifting air currents from the wind, a fan or someone walking past you.

    With Allodynia, you can look like you are seizing, but you are not. An anti-seizure medication will not work on Allodynia.

    Since there are currently no treatments for PPMS, I am left managing the pain and the spasms as best I can with the two strongest legally prescribable painkillers available-Toradol and Dilaudid for the pain and the nothing for the spasms.

    Stephanie, is there any way that you/we can get these less common MS symptoms recognized by the rest of the medical profession as legitimate MS symptoms?

    This would go a long way towards helping doctors and the rest of the medical community more quickly and accurately diagnose MS.

    No one should have to go through a multitude of doctors (in my case, about a dozen) to get a proper diagnosis, or in some cases any diagnosis.

  • alchemie
    3 years ago

    Thanks for posting this. What I don’t get is to be told by more than one Neurologist that my MS is “mild” but yet, I have (or had) all of these you’ve listed. Maybe its just the state that I live in. I don’t know.

  • Azjackie
    3 years ago

    Pre-storm pain, dizziness, low energy/weakness malaise, type “psuedo-relapse”. When the storm (rain or snow) ends and barometric pressure changes feel great.

    With over exertion weak feeling as if walking neck deep in drying concrete. With rest, feel like a toy cranked ready to go.

  • Nancy W
    3 years ago

    I have a symptom that I have never seen discussed. It is like a tremor in my ear that interferes with my hearing. I have had my hearing checked. It
    Is abnormal. I saw a neuro otologist who wasn’t very attentive. He just said it was tinnitus. But what is strange is that I can change the sound by tensing some muscles around my ears. Anyone else experience this.

  • Tinklecrawly
    3 years ago

    Great article Stephanie, thanks for posting this, I’m always getting really annoyed by those too short and simplistic lists of medical symptoms on the web describing complex and systemic illnesses, which only sum up the obvious and measurable. The symptoms you list above can be very debilitating, and definitely need attention.

    I’m trying to get diagnosed for two years now, finally saw a so called MS-specialist yesterday, who first lost my MRI-images, which I had to bring in personally an hour beforehand so he could have a look at them, after one and a half hour I was called in; first thing he told me he didn’t have time yet to look at the images, he swiftly flipped through them and concluded I didn’t have MS, but probably migraine without headache because I experienced tingling, had a swollen feeling at one side of my head and sometimes had slurred speech. He wrote a prescription for migraine and within 10 minutes I was outside again.

    He forgot to ask how I was doing and what my complaints are, which are, unfortunately, about 25 different ones, of which several are listed in your article.

    PBA: I sometimes burst out in tears without feeling sad, I just need to cry.

    Pruritis: I feel tingling and buzzing all the time, all over my body but especially my legs. Also it sometimes feels like I get bitten really hard by and insect in my legs, but there is nothing there to bite me. Does anyone else experience this?

    Two years ago I experienced ‘sudden hear loss’, which was very scary. I suddenly ‘heard’ a jet fighter in my right ear, and the noise was getting stronger and stronger until it was unbearable. I suffered from this for a couple of days and nights. I even took Prednison though I once swore to never take that junk again.

    Uhthoff’s Phenomenon: I always wake up with a strong feverish feeling, and improve tremendously by taking long cold showers. Oddly enough, my complaints get worse during the winter season, when it’s wet and cold.

    Speech: people sometimes say I sound like I’m drunk (when I’m not). I ALWAYS sound like I’m having a cold.

    The Hug: had it on about 15 different occasions the past 10 years, every time lasting for about half an hour. Extremely painful, can’t do anything but shiver and try to breathe.

    Hyperacusis: have that since about 5 years now. Can’t stand parties, festivals, concerts etc. anymore. Got near to a burnout because of my neighbor who used to pull her blinds up with a big bang every morning at 5.30am. Luckily got that sorted.

    I would like to add to the list: in my case, when symptoms get worse, my eyes change; they become small and swollen and it feels like my brain wants to force itself out of my skull through my right eye case and nostril. Does anyone recognize this?

    Also: during a bad episode I tend to wake up very early, with a kind of bang in my head (I’m sure it are not the neighbor’s blinds which cause this…) also I have other odd feelings in my head, like a wave of electricity going from the front to the back.

    I’m curious to know if anyone else had these experiences.

    This post has become a bit longer than I intended, had to get some things of my chest (I’m on my own considering this whole MS story), thanks for reading.

  • rmdanielsom
    3 years ago

    Hey Lady…

    You need a different Neuro but fast. If you truly have RRMS, you need to be on some type of DMT before it rolls over into SPMS. As someone with PPMS and debilitating migraines (45 mins or less to find a place to pass out from the pain-and no, there isn’t an FDA approved drug out there that stops my migraines), I am appalled by the behavior of this doctor.

    Find a Neuro, or Physical Medicine doc that takes you and your symptoms seriously. You may not have MS, you may have something else. You need, and deserve, a proper diagnosis.

  • ellj
    3 years ago

    Stephanie your article is wonderful!

    I posted a copy of it on another site = KK. One of the members, Nicol commented:

    Originally Posted by Nicol View Post
    Here are the symptoms I have experienced that appear in your list:

    1- L’Hermitte’s sign — I had it during two of my flares. It was a major shock that went down one side of my body from the neck to my toes including my arm, hand and fingers.

    2- Pseudobulbar Affect — It happened to me when I had my first flare in 2012. But hasn’t come back since.

    3- Paresthesia — It happens when it feels like doing so, mostly around the time of my flares. It looks almost like a rash but goes away after about 10 minutes.

    4- Uhthoff’s Phenomenon — Yep, I know all about that one. Too hot for me starts at 24C – 75F.

    5-Problems with speech — My wife says my speech worsens as I become more tired.

    6- MS Hug — I had it just below my ribs during my past flares.

    ————————–

    And here are the other problems I experience in every day life.

    1- Fatigue — I need a minimum of 10 hours of sleep per day. Once or twice per week, I sleep for as long as 14 to 16 hours in a row.

    2- Cognitive Dysfunction — I am losing my vocabulary and my writing skills. I am constantly searching for words and misspell words even more. I have to correct myself all the time. Earlier today, I wanted to write AS and I ended up writing HAS. I used to be a very accurate typist. Now, I am worth crap.

    3- Bladder Control (or lack of control) — I don’t pee any more. I dribble. I must catheter twice per day. I also wear pads at all time. If I plan to go somewhere where there will not be a bathroom, I must wear a diaper.

    4- Pain in my right leg — from my toes to just below the knee, I get horrible pains. The weight of my bed covers hurts.

    5- Restless leg syndrome — my legs twitch during my sleep.

    6- Tremors — I get some intentional tremors in my right hand two or three times per day.

    ——————-

    And finally a couple of things that only happened around the time of my last flare:

    1- Extremely sensitive skin — drying myself up after a shower hurt.

    2- Feeling temperature in reverse — this one lasted a few years. The thermoreceptors on my right side (from my armpit down to my toes) felt the cold as heat and the heat as cold. That weird feeling started at my fingers, up to (but not including) my shoulder, and down below the armpit to my toes. I used to call it the Harlequin Syndrome… for a lack of a better word.
    http://www.youtube.com/nicolsd

    I know you’re busy, but -could you contact him, pls …
    Thx

  • suesue55
    3 years ago

    I was dx 32 years ago so I have had pretty much all the symptoms listed but would like to add two…#1) I noticed when we visited the beach, the water was cold but felt like it was boiling to me
    and hot water (like eashing dishes, etc.) was freezing feeling. #2) Sweet food items tasted sour. Thankfully both were short lived episodes and haven’t returned, (it was tough getting the shower regulated. HaHaHa)

  • Kelly McNamara moderator
    3 years ago

    Hi suesue55. Thanks for the comment and for adding these to the list! Glad to have you a part of our community! – Kelly, Community Manager

  • Kimberly1223
    3 years ago

    Thank you for writing this article. I suffer from RRMS. At some point I have suffered with many of those symptoms you discussed. I have had MS since 2000,but was told by many doctors that I did not have MS, that I had arthritis. I had an MRI that showed lesions but was told it wasn’t MS. I was finally diagnosed in 2013 . One of the symptoms I have is hearing loss. It started about 5 years ago and I wear hearing aids.my doctor told me hearing loss isn’t a symptom , so I was glad to read your article saying it was .
    Thank you.
    Kims

  • daffypoo11
    3 years ago

    Thank you so much for this article. I suffer from the pins and needles, the electric like shock in my ear, and back spasms. My neuro typically says “not everything is MS” I’ve learned that many things are.

  • TedB
    3 years ago

    Stephanie,
    Thank you for sharing your ideas about rare symptoms. It is very difficult to know if a particular symptom has anything to do with MS or not without knowing that other people with MS had it too. I’ve had MS for over 25 years and have become incredibly thankful for it progressing very slowly and not disabling me in any significant way. However, through experience, observation, and sharing other people experience, I came to know that some of these rare symptoms are indeed MS and not other, equally plausible causes. For example, for several years now I’ve had PBA, although mostly related to crying and not laughing. I also have been experiencing leg spasms at night. These symptoms fluctuate in frequency and intensity and are very annoying, but not life altering. I have come to accept that this situation is likely to continue for the rest of my life and the best I can do is to adopt to the best of my abilities. The drugs prescribed to treat these symptoms are marginally effective, but I would urge everybody to try them anyway, as we are all different.

  • FichenDich
    3 years ago

    Within the past week I experienced perhaps the least known “MS Evil”. Half way into a one hour nap I was suddenly awakened. Quick as a flash I identified exactly what had cause my sudden awakening. No, it was NOT my bladder ! Think of a person who has fainted. To rouse them a smelling salt (ammonia ampule) is waved under their nose. The instant that I was awake my mind registered, “5% acetic acid ! Not 2.5%, but 5%.”

    As there was absolutely no reason whatsoever for the smell to be present, I went back to sleep. Awake half an hour later, perfectly remembering the incident, I did some thinking about it. Using a search engine, BINGO ! It was the third result. I had experienced an olfactory hallucination ! As I read about it it hit me that I have experienced it rarely for several years. Every other time I attributed it to daily life.

    Every other time it had taken the form of the smell of an especially fetid swamp. I attributed it to rodents under the floor. In Winter there are rodents under the floor. But there is never vinegar in the bedroom !

  • CopperEve
    3 years ago

    Me too! Initially I couldn’t articulate the scent, but to me all I can smell is rotting onions! And it is constant – lasting up to a month at times. Everything smells like it; my breath, body odor, clothing, etc… Thanks for sharing FichenDich and Bonaboo… I thought I was the only one! (smile)

  • Bonaboo
    3 years ago

    Exactly! finally..I’m not alone. Mine was a burning rubber smell & it woke me up out of a dead sleep, thought the house was on fire. it eased up a little but was constant for a few days.I thought i was losing my mind & was embarrased to even consult my Dr. about it thinking she might think i was nuts, thankfully she reassured me i was not & that it was an actual condition. i have had smaller episodes of it from time to time but never as bad as the 1st one.

  • Robert-Sharp
    3 years ago

    Hi Stephanie, I’m Bob. I am an engineer. I have had MS since 1993 when everything below my waist went numb. It was different but did not stop me from playing basketball or riding my bike. They found out what I had in 2001 when I got optic neuritis. My basketball playing and bike riding kept diminishing until I had to get a recumbent to ride and I can’t run anymore without tripping. My first experience was the feeling of swollen feet that hurt the longer I ran. Also there were always ants in my bed sheets. When I had bad attacks my ears would start to ring it sounds like leaving the water running in the kitchen when your in bed. After finding out I had MS I ignored most of these symptoms and kept playing basketball despite my feet hurting so bad. I got cramps when driving from Altus OK to Wichita KS that were so bad they would last for 2 hours while I screamed because I couldn’t take it anymore. I finally got Baclofin for that. My legs always itched until they got so numb I can’t feel it anymore. Sometimes the pain in my back is so bad it feels like it’s about to burst into flames it’s so hot.
    Over the course of the last 10 years I have had Dysphagia and the MS Hug which is particularly annoying since it about the only hugs I get anymore. The real annoyance since getting off Betaseron at $34000/yr is getting on Abagio at $68,000/yr and none of them are a cure. No wonder my wife wants a divorce it’s all so permanent with no end in sight. If only famous people would tell the public what it is like maybe more effort would be to find a cure and not a slow-it-down drug which I am convinced it doesn’t really slow anything down. I joined the MS Bike ride in 1990 and 1991 and I rode all 150 miles in ‘The Best Dam Bike Get together’. I think I got MS from the ride. I have ridden in 12 more rides since then and last year is the first one I missed. I rode 47 miles the year before.
    I just want to play basketball and ride my bike 100 miles. I just want a cure.

  • 9pmkpy
    3 years ago

    My first and only presenting symtom at dx was psychosis.

  • Debbie S.
    3 years ago

    Yes, I experience several of these symptoms. I also experience spasms in my legs and sometimes my whole body (though that is thankfully rare), mostly at night if I have overdone it during the day. I also have a drop foot on the right, poor balance, and extreme fatigue. The list goes on!

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