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    Tongue Atrophy

    I've had one sided tongue problems for many years. Every neuro I've ever had wasn't too concerned. I, as well as the neuros, figured it was some sort of tongue spasm. My speech has
    been affected mildly for years, but in the past years, it's gotten much worse.

    The idea of botox, if it was a spasm, was talked about, but not investigated because most of the neuros thought the side effects, i.e. swallowing issues, could be a bigger problem than the spasm.
    So I was referred a few weeks ago to the neuro whose specialty is botox, emgs, dystonias, etc.
    And botox is out of the question, even if it was a spasm, due to the effect it would have on my
    swallowing...so other neuros were right . But he says what I feel, and what causes my tongue to ball up near the back of my throat, and the inability t to stick it out or move it much, is tongue atrophy. I didn't even know that was possible in MS...thought it was ALS which had that symptom associated with it. But I consulted Dr. Google and it is possible if the lesion is in the right place and mine is. (medulla affects lower cranial nerves...and lower cranial nerve dysfunction can result in atrophy.)

    I went the speech therapist route about a year ago, and she said as far as speech there was nothing she could do...what she would suggest, I was already doing intuitively, like replacing "th" sound with "d" sound, etc. Also did a swallow test and everything was okay. So the main consequence is pretty major slurring, and pain, especially the longer I speak.

    So I can't be the only one with this symptom? Anybody else?

    #2
    RE: Tongue

    Hello,
    I've been searching for others with my symptoms, and you are the only person I have found on MS World posting about tongue issues.

    I have had intermittent pins and needles of the tongue for many years- even years before my MS diagnosis in 2004. I always attributed it to reactive hypoglycemia. Even though I may not be hungry at the time, when my tongue would feel tingly I would feel shaky and just not myself. Sometimes I would see spots, too. So, I would eat. For a long time, the pins and needles past and I thought it was because I just ate to fix the issue.

    More recently, the pins and needles turned to a numbness of the tongue one day and when I tried to eat I became afraid to choke on my food because my tongue was numb.

    The last year, I've been experiencing extreme muscle tightness alongside the sides of my neck that attach just behind the ear. Under my lower jaw bone is tight as well. And as that gets tight, other muscles in my neck, upper back and chest get into spasm causing symptoms that are unbearable without a muscle relaxer. However, a muscle relaxer is a temporary fix. And it never release this one tight muscle that runs just up under the ear on the sides of my neck.

    After having episodes of intense occipital headaches (and even numbness at the back of the head after a gentle chiropractic treatement) and deep neck/throat muscle tightness leading to coughing when eating and drinking and drinks even shooting out my nose at one point, I learned from an ENT last year that I had signs of problems with cranial nerve IX when my gag reflex on the left side was diminished. The left side is also tighter than my right in the neck area. The ENT attributed this to MS. I made it to my MS Specialist who also noticed weakness on my left side in my leg and my last two fingers in my left hand have had loss of sensation.

    I'm going for an MRI of my brain, cervical, and thoracic spine next week. I'd be very surprised if there are not new lesions. Prior to this, my brain MRI shows only 6 small lesions- notably all on the left side.

    If this is MS, or really- WHATEVER is causing this- I truly desire a treatment that is going to help me to live more normally. Natural treatments like acupuncture, gentle chiropractic, stretching, and exercise have done nothing to rid me of the neck spasm.

    It is my feeling I may have to experiment with some new medications. I do not tolerate medications well. It took me a long time to find a muscle relaxer that I can live with. But, it is short acting.

    I'd be interested to know which medications you are taking that you find helpful.
    I, too, have read about ALS wondering if perhaps something has been overlooked, but I stopped as I do not want to place thought into the idea that this may not be reversible. At least with my MS in the past, even my worse symptoms that lasted many months, even more than a year, resolved to the point where I forgot I even had them.
    Praying for spontaneous recovery over here! And in the meantime, getting my questions ready for my next appointment with the neurologist once we have the MRI results.
    Thanks for listening!
    Irish.Girl 40 yrs old
    Diagnosed with RRMS 2004 at 30 yrs old
    Possibly transitioning to SPMS
    Rebif 3 mos, Copaxone 5 yrs
    Last 4 years no DMD

    Comment


      #3
      I have tongue atrophy due to a left sided lower medulla lesion. It spasms sometimes, fasciculates, and gives me trouble swallowing too. I guess we are all in the same boat without an oar.

      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        Originally posted by Irish.girl View Post
        Hello,
        I've been searching for others with my symptoms, and you are the only person I have found on MS World posting about tongue issues.

        I have had intermittent pins and needles of the tongue for many years- even years before my MS diagnosis in 2004. I always attributed it to reactive hypoglycemia. Even though I may not be hungry at the time, when my tongue would feel tingly I would feel shaky and just not myself. Sometimes I would see spots, too. So, I would eat. For a long time, the pins and needles past and I thought it was because I just ate to fix the issue.

        More recently, the pins and needles turned to a numbness of the tongue one day and when I tried to eat I became afraid to choke on my food because my tongue was numb.

        The last year, I've been experiencing extreme muscle tightness alongside the sides of my neck that attach just behind the ear. Under my lower jaw bone is tight as well. And as that gets tight, other muscles in my neck, upper back and chest get into spasm causing symptoms that are unbearable without a muscle relaxer. However, a muscle relaxer is a temporary fix. And it never release this one tight muscle that runs just up under the ear on the sides of my neck.

        After having episodes of intense occipital headaches (and even numbness at the back of the head after a gentle chiropractic treatement) and deep neck/throat muscle tightness leading to coughing when eating and drinking and drinks even shooting out my nose at one point, I learned from an ENT last year that I had signs of problems with cranial nerve IX when my gag reflex on the left side was diminished. The left side is also tighter than my right in the neck area. The ENT attributed this to MS. I made it to my MS Specialist who also noticed weakness on my left side in my leg and my last two fingers in my left hand have had loss of sensation.

        I'm going for an MRI of my brain, cervical, and thoracic spine next week. I'd be very surprised if there are not new lesions. Prior to this, my brain MRI shows only 6 small lesions- notably all on the left side.

        If this is MS, or really- WHATEVER is causing this- I truly desire a treatment that is going to help me to live more normally. Natural treatments like acupuncture, gentle chiropractic, stretching, and exercise have done nothing to rid me of the neck spasm.

        It is my feeling I may have to experiment with some new medications. I do not tolerate medications well. It took me a long time to find a muscle relaxer that I can live with. But, it is short acting.

        I'd be interested to know which medications you are taking that you find helpful.
        I, too, have read about ALS wondering if perhaps something has been overlooked, but I stopped as I do not want to place thought into the idea that this may not be reversible. At least with my MS in the past, even my worse symptoms that lasted many months, even more than a year, resolved to the point where I forgot I even had them.
        Praying for spontaneous recovery over here! And in the meantime, getting my questions ready for my next appointment with the neurologist once we have the MRI results.
        Thanks for listening!
        Hi Irish Girl,

        Yeah, I think I responded to your thread on tongue numbness.

        Lisa (22 cyclist) and I have lesions in the same area, and that's what they say causes our problems with our tongues. The lesions are in the medulla, and the medulla which is at the base of the brain is connected to issues with lower cranial nerves.

        As to ALS, I've had this symptom since 1996, so I know that's not what's happening, and you also say your tongue symptoms have been going on for years, so you're in the "same boat."

        You mention the muscle that runs from behind your ear down the side of your neck to your clavicle...that's call the SCM or sternocleoidomastoid muscle (not sure I spelled that right)
        Over the years I've had the same issues, now my tongue, face, and SCM muscle are all pretty much atrophied, there is no movement on the left side of my face, and that neck muscle is pretty flat, shows no definition of muscle.

        Here's what's worked for me, sort of a smorgasbord of meds, that each address a different part of the problem.

        I use a low dose of baclofen for my neck spasticity (I have a pump, but it only works on muscles and spasticity below the level of the pump) so low dose baclofen helps relieve that tightness in my neck. I take a low dose of Klonopin for the sensations, i.e. burning nerve pain also I take one of the regular meds for neuropathic pain. And when push comes to shove and the whole side of my face/mouth/tongue hurts too bad to talk or move my mouth, I have 2 choices. I can go lie down and absolutely not move my mouth or tongue, put some heat packs in the area and the spasm and pain will ease some, or if I have to be in a social setting, and continue to talk and appear like I'm enjoying myself (think how many of us have mastered this art of deception), I will take a 1/2 a pain med so I can continue to function, but won't be zoned out from a whole pain pill.

        Massage is marvelous, especially on the SCM muscle, but it's effects are fleeting, at least for me.

        One more trick you can try and I'm not sure why it works, perhaps just distraction, and that is to suck on a hard candy (I use ginger drops, or just plain raw ginger to suck on because no calories)...or hold a toothpick between your teeth. My husband makes me these plastic "sticks" from weedwhacker string. He melts the ends, so they're blunted, and I'll fiddle with one of those in my mouth, and it does distract from the pain.

        As you say, pray for remission of this symptom. When we've had tongue discussions before on this board (you can use the advanced search function and find lots of older threads about tongue issues)...the vast majority have had similar issues, but they were passing, or would come and go as other MS symptoms do.

        If it sticks around, that it fades to a level where it's background noise....still there, but not bad enough to occupy your thoughts all the time.

        Comment


          #5
          You mention the muscle that runs from behind your ear down the side of your neck to your clavicle...that's call the SCM or sternocleoidomastoid muscle (not sure I spelled that right)
          Over the years I've had the same issues, now my tongue, face, and SCM muscle are all pretty much atrophied, there is no movement on the left side of my face, and that neck muscle is pretty flat, shows no definition of muscle.

          Here's what's worked for me, sort of a smorgasbord of meds, that each address a different part of the problem.

          I use a low dose of baclofen for my neck spasticity (I have a pump, but it only works on muscles and spasticity below the level of the pump) so low dose baclofen helps relieve that tightness in my neck. I take a low dose of Klonopin for the sensations, i.e. burning nerve pain also I take one of the regular meds for neuropathic pain. And when push comes to shove and the whole side of my face/mouth/tongue hurts too bad to talk or move my mouth, I have 2 choices. I can go lie down and absolutely not move my mouth or tongue, put some heat packs in the area and the spasm and pain will ease some, or if I have to be in a social setting, and continue to talk and appear like I'm enjoying myself (think how many of us have mastered this art of deception), I will take a 1/2 a pain med so I can continue to function, but won't be zoned out from a whole pain pill.

          Massage is marvelous, especially on the SCM muscle, but it's effects are fleeting, at least for me.

          One more trick you can try and I'm not sure why it works, perhaps just distraction, and that is to suck on a hard candy (I use ginger drops, or just plain raw ginger to suck on because no calories)...or hold a toothpick between your teeth. My husband makes me these plastic "sticks" from weedwhacker string. He melts the ends, so they're blunted, and I'll fiddle with one of those in my mouth, and it does distract from the pain.

          As you say, pray for remission of this symptom. When we've had tongue discussions before on this board (you can use the advanced search function and find lots of older threads about tongue issues)...the vast majority have had similar issues, but they were passing, or would come and go as other MS symptoms do.

          If it sticks around, that it fades to a level where it's background noise....still there, but not bad enough to occupy your thoughts all the time.[/QUOTE]

          Thanks for sharing the ideas about medications and also about the experience with the SCM muscle spasm. I am also having scalene spasm as well.

          So, while the fleeting pins and needles of the tongue feeling is something that I manage well, the muscle spasms in the sides of SCM and Scalenes are quite unbearable. It sounds like you are saying it's your experience that the muscles will eventually wear themselves out from all the spasm and then wear away/atrophy.

          Interesting. I'm going to be sure to ask if there are lesions in the medulla.

          This boat is rocky at times, but I'm still floating down the stream.
          Irish.Girl 40 yrs old
          Diagnosed with RRMS 2004 at 30 yrs old
          Possibly transitioning to SPMS
          Rebif 3 mos, Copaxone 5 yrs
          Last 4 years no DMD

          Comment

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