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Anyone else have MS that mostly affects the spine?

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    Anyone else have MS that mostly affects the spine?

    My brain only has a few lesions, but my thoracic spine has been badly hit, including an episode of Transverse Myelitis that I never fully recovered from.

    The Neuro tested me for NMO and the test was negative, plus my spinal tap showed the oligoclonal bands associated with MS.

    I see a lot of posts on here about brain lesions, but I'm wondering if anyone else has been hit hard in the thoracic spine.

    I feel as if every hit on my spine is leaving me with more and more disability.

    #2
    Hi MSLorrieL,

    When I was diagnosed my neuro told me MS was affecting the spinal cord, MRIs were clear. He was correct.

    The cervical spine has been the most effected by MS. At one time the c-spine showed numerous lesions, now I have a few c-spine lesions.

    I had one neuro suggest I had NMO, I was tested and it was negative.

    I have heard the term 'Spinal MS' for those with mostly spinal cord lesions but I don't know if this is a correct term or not --- I have never asked my neuro.

    I feel as if every hit on my spine is leaving me with more and more disability.
    Spinal cord lesions are well known for causing mobility problems. However, it is important not to think that will be your case. Regardless of lesion location the effects of MS is different for everyone.

    After 28 years I am very low on the Disability Scale. I had one neuro, after looking at my c-spine MRI, who was shocked I was still walking
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      I do.

      I started having numbness problems in my left foot when I was 45. This symptom has never resolved.

      Several MRIs of my brain were each clear over the years but the MRI of my spine had 'numerous' lesions. I am not sure what part of the spine was done.

      My NMO test was negative.

      My spinal tap was inconclusive with one band (if I remember correctly).

      I believe I have either PPMS or SPMS since I do not have any relapses but just a slow steady decline over the past 10 years. But my neurologist has me labeled as RRMS. I think it is so my insurance will pay for the dmds. I am on Avonex.

      My walking and balance are most affected.

      Nightowl

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        #4
        I have only 1 old brain plaque but my Cervical Spine is loaded.

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          #5
          Nearly all of my lesions are in my spine. My symptoms are mild, but it is my walking that is most affected.
          Carole
          diagnosed 10/25/11

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            #6
            I have two brain stem lesions as well as lesions within the cord at C2-C3, C5-C6 and T2-T3.

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              #7
              Thank you all so much! My Neurologist has me at 5.0 on

              The EDSS at this point. My mobility is somewhat affected and I have bad problems with lack of energy and my eyesight has been affected mildly.

              I wondered if I was the only one!

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                #8
                Yes,so far all visible on MRI lesions have been in T-spine: t7-t9, and three tiny ones around t5 and t6. also had suspected brain stem lesion not viewable but that caused bilateral TN and other issues ( thankfully resolved ).

                I have had 3 NMO tests over the last 5 years, all negative. I have never had visible brain lesions, no optic neuritis, and no CFS bands despite 2 taps a few years apart. I have had noticeable MS symptoms for about 7 years but only dx and hence treated for 2 years.

                I am an "interesting" case to my MS neuros (sigh!) I get heat sensitive, etc...the MS is just atypicalish.
                RRMS 2011, Copaxone 2011-2013, Tecfidera 2013-current

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                  #9
                  I was originally diagnosed 6 years ago with transverse myelitis with a large lesion on my t-spine. It started with tingling/numbness on both feet, which the spread to my upper chest.

                  Three years later, I had another large attack on my c-spine, which affected my upper body, arms/hands and left side numbness down to my feet. Since then have several more c-spine lesions and clear brain and 2 o-bands. Tested negative for NMO.

                  I am glad I saw this post since I thought if it was truly MS, I would by now have also brain lesions.

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                    #10
                    I have about 20 lesions in my brain. All but one were present at diagnosis. All of my real activity seems to be in my cervical spine (or optic nerve) for whatever reason. I'm grateful that I'm fully mobile 7 years after onset, but do worry about the future.

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                      #11
                      No lesions in my brain, my LP was very clear (without o-bands), and my blood work was very good. No optical problems.
                      My c-spine has a huge lesion. The MS doctors are not sure if it is MS or not, because of my negative tests. I have had only one exacerbation, partially attributable to a bad knee (meniscus tears and fluid, bone fragments, and osteoarthritis).
                      My legs used to feel heavy, but lately, I have felt better and I can function very well with a 200 mg of Advil or 250 of Tylenol, 3 times a day.

                      I am literally waiting for the "other foot to drop," as I have numbness in my hands and feet.

                      My MS doctor told me that he suspected Transverse Myelitis, brought on by a virus when I had the Shingles a few years ago.

                      I am taking it all day by day, trying not to let it get me down.

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                        #12
                        me too

                        I am so glad I saw this post. I have been through the ringer the last year or so. I was initially dx with Transverse Myelitis. Then I was diagnosed with MS. Then they took MS away and said they thought I had a spinal chord stroke. Now they gave me the DX of MS again. I am now on Rebif. I have no brain lesions, my spinal tap is clear but there is nothing else it can be. I have been tested numerous times for NMO and thankfully, that was negative. Is that the same as Devics because that was negative too. I guess when you look at everything else it could be MS isn't too bad. It is all relative. Thanks for the post.

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                          #13
                          C spine as well..

                          When I had my first attack my whole left side went numb. Started with left hand and just trickled down to my foot. My first neurologist said it was MS but only had a few lesions on brain that concerned him. But my c spine had several. So he retracted and finally ran spinal tap for MS and tons of blood work, tested for every disease known to man. He then thought I had Devics before my spinal tap came back and then sent me for another test for the Devics. I had o bands of 9 and tested negative for Devics and I mean 0. He still wouldnt say I had MS. So I changed Dr.'s and took every thing to my new doc and he said I had classic MS. Even though 90% of lesions are on C spine. He said my high band count was the deciding factor. Went for eye nerve test and was normal.

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                            #14
                            I have only three lesions on my brain, the others are on my spine.

                            I have Optic Neuritis, severe dizziness, severe fatigue and cog fog and some balance issues.

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