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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

Community Answers
  • DonnaFA moderator
    6 days ago

    Glad to hear it @markt! 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 ( team)

  • Kim Dolce moderator
    2 weeks ago

    Hi @markt, 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

  • markt author
    2 weeks ago

    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

  • Janus Galante moderator
    2 weeks ago

    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

  • markt author
    2 weeks ago

    Hi Janus
    when I had it it was very strong and electric
    not a mild tingle but more like a shock when I looked down
    it was to the point when I got hair cuts I would not get it washed as I could not take the shock when I was in that sink thing
    I had it for about 2 or 3 years then it got nicer and kind of went away but it has a shadow of a return im buzzy numb on my full left side leg arm even body so im happy not having it shoot down my spine also

  • Janus Galante moderator
    2 weeks ago

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

  • Janus Galante moderator
    2 weeks ago

    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!

  • DonnaFA moderator
    2 weeks ago

    Hi @markt

    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 ( team)

  • markt author
    2 weeks ago

    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


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