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Anyone else here with Clinically Isolated Demyelination Syndrome?

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    Anyone else here with Clinically Isolated Demyelination Syndrome?

    I did a search and did not find anything (except my own intro message). I would like to share notes with others with CIDS.

    To get started - if you have CIDS, have you ever had an MS Hug?

    Yesterday, after having had CIDS for 3 yrs and 2 months, I had what I think was an MS hug. I've had pain 24/7 in that area the entire time (severe for the first year; gradually dropping to what is now usually a 3-4 on a scale of 10 on most days). I'd been out in the morning removing non-native invasive plants from a park - something I do every week. I drove home - 30 min. Had some lunch and did some chores - another hour. Then suddenly, out of the blue, my pain shot up fast - very piercing (felt like piercing from the inside) to a 7. It leveled off after about 20 min and after a few hours (on heating pad), it subsided to a 3-4 and has remained there.

    So I'm wondering if this was an MS hug and whether anyone else diagnosed with CIDS has had this happen.

    Thanks!

    #2
    Hello! Clinically Isolated Demyelination Syndrome is newer term. You will have better success if you lookup Clinically Isolated Syndrome, or CIS.

    MS Hugs are normally transient in nature, and do not last for years at a time. Have you ever had your pain evaluated?

    I wrote about MS Hugs some years back -wow- several years back!

    https://www.msworld.org/forum/forum/...ugs-the-basics

    Please keep us informed and I wish you well!

    Comment


      #3
      https://multiplesclerosisnewstoday.c...hug/#Treatment

      Comment


        #4
        Hi, Marco,

        I searched all four words, singly and in combinations but I did not try CIS. Will do that now.

        Yes, I have been to two pain management specialists at the teaching hospital where my neurologist is located. Both were candid in saying that there really isn't much for this kind of pain. They pushed gabapentin, so I agreed to try it. It turned me into a zombie in under 3 days (at the lowest dose).

        No, the daily pain is not MS Hug. It was this one incident last week - sudden and severe and very different from the persistent pain. It went all the way around my torso and was both squeezing and sharp.

        I'll read your article now.

        Thanks so much!



        Originally posted by Marco View Post
        Hello! Clinically Isolated Demyelination Syndrome is newer term. You will have better success if you lookup Clinically Isolated Syndrome, or CIS.

        MS Hugs are normally transient in nature, and do not last for years at a time. Have you ever had your pain evaluated?

        I wrote about MS Hugs some years back -wow- several years back!

        https://www.msworld.org/forum/forum/...ugs-the-basics

        Please keep us informed and I wish you well!

        Comment


          #5
          Oh, I should add that I tried Scrambler therapy which worked fairly well for the first session of treatments and several weeks thereafter. I was warned that it would return (it never got to zero but it was often close to zero but at that point, even a 1 on a scale of 10 felt fantastic). Well sure enough it returned and I went for the second set of treatments and it did not improve at all. I gave up after I think it was 9 or 10 treatments and in the followiing two weeks, the pain was actually worse.

          In addition - Low Dose Naltrexone, Rx strength Lidocaine, TENS unit, physical therapy, THC (gummies and lotion), gabapentin cream ... nothing worked. Salon Pas gel (not the patches or the spray) sometimes knocks the pain back.


          Originally posted by Marco View Post
          Hello! Clinically Isolated Demyelination Syndrome is newer term. You will have better success if you lookup Clinically Isolated Syndrome, or CIS.

          MS Hugs are normally transient in nature, and do not last for years at a time. Have you ever had your pain evaluated?

          I wrote about MS Hugs some years back -wow- several years back!

          https://www.msworld.org/forum/forum/...ugs-the-basics

          Please keep us informed and I wish you well!

          Comment

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