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    Question about c-spine lesions

    So I've had MS since 2001 (officially diagnosed in 2007). It's been a relatively mild case of RRMS and I was doing well on Copaxone and then Betaseron.

    I'm currently having a new relapse with multiple symptoms. When I saw the NP at the MS Center last week, she said the types of symptoms I'm experiencing point to lesions on my cervical spine. I've never had a C-spine MRI before, just brain MRIs, but she sent me for MRIs of both.

    She also said that if I am getting lesions now on my cervical spine, that's "prime real estate" and they would probably suggest I move to a more aggressive drug.

    I'm curious if your neuros/MS specialists have said the same thing about lesions on the cervical spine. Is that a typical approach or a more aggressive approach? I'm just curious because this is only the fourth relapse I've had in 10 years, and the first in 4 years, so I'm just a little surprised that we're suddenly considering moving to Tysabri or Gilenya already. (My current symptoms aren't even as debilitating as my first and third relapses; just more of them this time--muscle jerks and muscle spasms, dramatically increased urinary frequency and urgency, and possibly some mild visual-spatial issues.)
    2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

    #2
    Hello hope,

    Cervical spinal cord lesions can cause symptoms from that point down. C-spine lesions are well known for causing mobility problems.

    I have numerous c-spine lesions and yes, neuros really don't like to see lesions in that area. When I was diagnosed my MRI was clear but due to my symptoms my neuro said this disease was affecting the spinal cord...he was obviously correct.

    and they would probably suggest I move to a more aggressive drug
    Is that a typical approach or a more aggressive approach?
    Since I have never used a DMD I don't have an answer for you but I am sure someone else will
    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

    Comment


      #3
      Interesting! My previous two major relapses both causes symptoms that affected mobility more than my current ones are (severe ataxia on my right side in 2001 and severe paresthesia that hindered my walking on my left side in 2007). I wonder why they've never done a C-spine MRI on me before.
      Thanks for your reply!
      2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

      Comment


        #4
        When I was first dx I had a MRI of brain and C spine, this showed multiple brain and I think from memory 2 or 3 in my C spine the one at C1-C2 was the largest at 2.5cm. It was followed up by another full spine in which I had 5 spinal lesions in total. I went on to used avonex for a year followed by copaxone. Each MRI after has shown improvement in all my spinal lesions and I only developed a new one in the time when I had the washout between avonex and copaxone. Now my spinal MRIs are pretty darn good and have healed very well. The copaxone is doing me well. I will be honest and say they are the ones that frighten me the most.

        If you have never had spinal MRIs before I am not sure how she can say they are new (they could be of course). The worst flare I had was the one that caused my dx and although I have some issues with my legs and arms my symptoms have improved with the healing of the lesions. I tried Tysabri but it didnt agree with me at that point. I would try it again but not until I felt my life was beginning to be so impaired it was warranted. If you are happy with how things are going maybe you should ask to have another spinal MRI in 3-6 months time and see if they are healing a little before firing the big guns.

        Jo

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          #5
          Spinal cord lesions can be particularly difficult to detect on MRI film. I do have many brain lesions, but no lesions detected on c-spine MRIs.

          My MS Specialist has determined that despite no visible c -spine lesions, that based on the years I have experienced intermitent paralysis, pain in my arms, poor exams, combined with the difficulty of detecting lesions, he assumes there is a lesion present.

          Comment


            #6
            going to a 2nd area, the brain then cervical spine is progression...but i think there is a "push" to get all people from the existing 30% drugs to the newer 50-60% drugs and your new lesions are the excuse they need to make the switch for you.

            before the newer drugs were available everyone made do with the crab drugs. at times i wonder how long it will be before the crab drugs are in effect obsolete. I'm thinking the interferon's will go first, copaxone may be around for a much longer time because it does not work in the immune system as the interferons and the newer drugs do. but if the interferons & the newer drugs all work in the immune system, why use the lower efficiency interferon's?
            xxxxxxxxxxx

            Comment


              #7
              Originally posted by 0485c10 View Post
              going to a 2nd area, the brain then cervical spine is progression...but i think there is a "push" to get all people from the existing 30% drugs to the newer 50-60% drugs and your new lesions are the excuse they need to make the switch for you.

              before the newer drugs were available everyone made do with the crab drugs. at times i wonder how long it will be before the crab drugs are in effect obsolete. I'm thinking the interferon's will go first, copaxone may be around for a much longer time because it does not work in the immune system as the interferons and the newer drugs do. but if the interferons & the newer drugs all work in the immune system, why use the lower efficiency interferon's?
              Can you explain what you mean about "30% drugs" versus "50-60% drugs"? Is that the rate they reduce relapses? (I have just started researching G and Ty and don't know much about them yet.) Do you think this push is a positive thing?
              2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

              Comment


                #8
                mostly spinal lesions

                I've been told from the start that my MS is aggressive. My 1st Neuro said that my spine is covered and that I have a large lesion on my brain stem. I started on beta. I was on it for 8months before I went off it due to reactions. In that time I had 3 flares and in 1 MRI my brain stem lesion grew in size and was active threw 2 rounds of steroids.

                I now see a MS Neuro and he has said I'm SPMS and he's trying to get me on G. I'm due for a MRI so I will see whats new and whats grown... My lesions don't seem to "heal" like some ppl but...it is what it is right?!?!?!

                I have problems walking, arms, hands, brain and balance. Some of the "normal" MS things to. My problems are mostly on my left side so idk what that is all about. I have 7 brain lesions. Maybe thats what it is?

                isamadjul
                (allyson)
                DX 10/10, JCV postitive by a lot (said Nuero lol), Betaerson, Gilenya, Tecifidera, Aubagio now on Ocerevus

                Comment


                  #9
                  whoa! wait a minute!

                  i have seven spinal cord lesions. 5 in my cervical spine, one at the cervico-medullary junction (where the brain turns into the spinal cord) and one at the conus medullaris (the very end of the spinal cord...around the T12/L1 level). these were all found on MRI's that were used to diagnose me. thats in addition to 6 brain lesions. if cervical and spinal cord lesions point to a more advanced disease process why the $*&%(% did my docs not tell me this?! should i be concerned that copaxone is not enough? i am 30 years old and i have 13 lesions...it would seem that the high number of lesions would point to a disease process that is either 1) not new (one lesion a year= 13 years at least) or 2) quickly progressing. now i am scared. should i be asking more questions of my neuro? is there anyone here who has as many spinal cord lesions as i do?
                  dx: RRMS 9/8/11 copaxone 12/5/11

                  Comment


                    #10
                    New dx with brain + cervical lesions

                    I just was diagnosed with MS 4 wks ago, and the brain had many lesions (don't know the number tho) and the cervical MRI had one biggun from C-2 - C-6. I was 1st told PPMS, but then maybe RRMS or both.

                    Besides the constant imbalance, cognitive, and bladder issues, the right leg weakness, fatigue, and foot drop I was told was from the c-spine.
                    Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
                    Ampyra 10mg 2xday
                    Copaxone 1/20/12

                    Comment


                      #11
                      Originally posted by meeegun View Post
                      if cervical and spinal cord lesions point to a more advanced disease process why the $*&%(% did my docs not tell me this
                      Your doctor didn't tell you because there is no way to know if anyone will end up with an "advanced disease process." This disease is very individualized. No one knows, not even your doctor, what the outcome for anyone will be...regardless of MRI findings.

                      Lesions are a part of this disease. MS affects the Central Nervous System (CNS) which includes the Brain, Spinal Cord and Optic Nerves. Lesions can and do show up anywhere in the CNS.

                      is there anyone here who has as many spinal cord lesions as i do?
                      I have enough cervical spinal cord lesions that they are not countable...I have numerous.

                      jbell2435:
                      I just was diagnosed with MS 4 wks ago, and the brain had many lesions (don't know the number tho) and the cervical MRI had one biggun from C-2 - C-6. I was 1st told PPMS, but then maybe RRMS or both.
                      If I am reading your post correctly you have a continous lesion that spans C-2 to C-6? Did your Neurologist mention testing for Neuromyelitis Optica (NMO)?

                      MS does not typically have large continous lesions, such as you have described. Lesions are small in MS. NMO is known to span large areas of the spinal cord.

                      Information about NMO also known as Devics Disease:
                      http://www.myelitis.org/nmo.htm

                      There are members here at MSWorld who have NMO and can offer you more information and resources if you so choose. If you want, start a new thread with NMO in the title for more information from those members.

                      I was 1st told PPMS, but then maybe RRMS or both.
                      There has obviously been a misunderstanding between you and your doctor. You cannot have both Primary Progressive MS AND Relapsing Remitting MS. There is Progressive Relapsing MS, it is rare with only about 5%
                      of those with MS being diagnosed with it.

                      The URL below will give you an explination of the "types" of MS. It can take time for a Neurologist to determine where a patient might fit.

                      Information about the "types" of MS (prognosis):
                      http://www.nationalmssociety.org/abo...sis/index.aspx
                      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

                      Comment


                        #12
                        This is totally anecdotal, but the symptoms that sent me to a neuro and ended up with my diagnosis a week later all came from my C-spine (Spasticity in one leg, loss of sensation in the flesh of the other, lack of fine motor control in one hand). They found one honkin' lesion there, and another 10 in my brain.

                        At my last MRI, I had one new brain lesion, so I'm sitting at 12 lesions total (well, as far as they can tell. MRIs only give so much info). My neuro is quite happy to have me on Copaxone instead of one of the bigger guns.

                        I think my question for your medical team would be whether they are concerned that you have a c-spine lesion at all, or if it is because one has only surfaced after all these years. Since the risk with the other drugs is higher, I'd ask them to discuss the research behind switching you so you can make an informed decision.

                        Comment


                          #13
                          Thanks for all the responses!
                          I do have a small update: The radiologist's report of my C-spine MRI says it is "unremarkable." Apparently no lesions at all on my spine. It said there are "several" on each side of the brain but we'll have to wait till the MS specialist reviews the films to know if any of those are new.
                          Given my symptoms, I'm surprised my spine was clear, but relieved!
                          2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

                          Comment


                            #14
                            I was dx 20 years ago with a cspine MRI and an LP. Didn't have my first brain MRI until 2001, which showed lesions there too, probably there in 1991.

                            I had my second cspine MRI just last year, and the lesion is still there along with one in my lumbar too.

                            I have had a very manageable case of this dreadful disease and I thank God for that. I can still walk, I can't ski or take long hikes anymore but my prayer is to stay stable.

                            Your symptoms and course sound a lot like mine. The brain and CNS are amazing and that's why Dr.s can't tell us how the MS will effect us.

                            Keep researching and asking questions, knowledge is empowering.
                            Opiegirl, Dx 1991
                            Have never used DMD's.

                            LDN 9/2011-9/2012 & just started again 6/14
                            Estriol 9/12-present
                            Still Hopeful.

                            Comment


                              #15
                              Number of Lesions

                              Someone asked about number of other's lesions on spine... and I'm like someone else wrote, there are so many they quit counting...

                              For real! I couldn't believe it, the mri reports went from reporting on each lesion to just saying "Lots" of Lesions at such or such vertabrae...

                              But lucky for me, I got on Ty and everything has seemed to stop...

                              Good Luck to YOU!!!
                              -Creede

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