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Does everyone get Lhermitte's sign? Does it come and go?

I was diagnosed about 9 years ago and I still have every symptom that I did when this all got going they all have gotten slowly worse and I have not had any time when I had none of them. But one Lhermitte's sign I had that for a while but that I no longer have ? So just wondering if others have that one go away but not others ? thanks markt

  1. Hi According to the MS Trust, only about 16% of MS sufferers will experience Lhermitte's Sign. Like most other MS symptoms it can come and go. I hope that helps! -Warmly, Donna (MultipleSclerosis.net team)

    1. thanks donnafa
      yes that helps
      as im one of the special people that keeps all the symptoms without the regression
      but that one has gone so I was just questioning that as its odd for me

      thanks

  2. Hi markt,
    just a comment on what I've personally experienced with this. I had never heard of it until my neurologist had me put my head down (the nickname is barberchair phenomena) toward my chest. The symptom for me was mild tingling, especially in my right hand.(Fingers)
    I still experience the exact same symptoms if I have my head in a downward position.
    Thankfully it sounds as if this symptom at least, is no longer an issue for you!
    Thanks for asking about this, it's a good question! Janus

    1. That's what I've heard, that for so many it's very severe and more of a shock and a shooting sensation!.
      I'm very thankful to not have experienced it to that degree and hope that it doesn't come back to you ever again like that!

    2. And even more, that it never comes back at all!!

  3. Hi , I had Lhermitte's sign initially--it was very mild, just a buzzing feeling all the way down--and for several years thereafter. But it went away.

    And to your comment about retaining symptoms after an attack: With the exception of my very first attack, all my relapses afterward gave me permanent symptoms as well.

    It's been twenty years since my first attack and some symptoms have gotten worse, some stayed the same, and some new ones have developed without having had a relapse.

    This disease is crazy unpredictable, isn't it? We sure learn to go with the flow!

    We could say that your experience is both unique and similar to that of many of us. Hope you keep posting, markt, it reminds us all that we are not alone. Best, Kim, moderator

    1. Hi Kim
      thanks for your info
      im not sure that I have attacks and relapses
      my first symptom was leg numbness and arm left side was all numb all the time
      that was the start of it all
      and it has always been
      they all like you say "some symptoms have gotten worse, some stayed the same, and some new ones have developed without having had a relapse"
      I have noticed that sometimes in my list of symptoms the #1 spot may change and move around a bit but mostly I can be sure that Fatigue is #1
      brain fog and memory issues have a great effect also
      eye and head aches are also there with dizzy and vertigo
      and weakness on my left side all have gotten worse in the last year
      I also have a constant ringing in my ears and loud (tinnitus) some say not related but im not sold on that and I kind of deal with that but
      it makes for fun days for sure
      thanks

  4. Glad to hear it ! I'm so glad that Janus and Kim shared some personal experiences with you as well. I know that's priceless in validating your experience! -Warmly, Donna (MultipleSclerosis.net team)

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