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  • #16
    I was going to ask if you had been evaluated for SI joint problems. Have you ever tried SI joint injections? You can also have a SI radiofrequency ablation for pain. Are you familiar with sciatica?
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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    • #17
      Originally posted by ~Lin View Post
      I was going to ask if you had been evaluated for SI joint problems. Have you ever tried SI joint injections? You can also have a SI radiofrequency ablation for pain. Are you familiar with sciatica?
      I am going to ask a little more about it; what he told me last time was that if it was just the hip pain, or just something else he would focus more on that one particular thing. But because it's a combination of the pain, stiffness, pain, speech problems, he was suspecting something more like MS ... but then the MRI was clear.

      I've never tried anything for the SI pain other than chiropractor, hot/cold packs, ibuprofen & acupuncture.

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      • #18
        Lin, (in case you want more detail than Bonnette provided) my understanding is three lesion types exist (in chronological order using my terminology): active (increased blood accumulation), inactive (scar tissue), very old (disintegrated tissue, aka hole) .

        Multiple kinds of MRI protocols exist (e.g., T1, T2, etc - I cannot name them).
        Without contrast (in all MRI protocols), active and inactive appear the same (white), and old appear black (I think).
        With contrast, active and inactive lesions can be differentiated in one kind of protocol (I can't remember which).

        So contrast reveals which, if any, lesions are active; it is NOT needed for MS dx. I believe docs use it to help them determine severity of progression, whether to medicate a suspected relapse, and efficacy of DMT.
        Last edited by chasmengr; 01-26-2015, 05:15 PM.
        Chas
        TiLite TR3
        Dual-Axle TR3 with RioMobility DragonFly
        I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

        "I know you think you understand what you thought I said, but what I don't think you realize is that what you heard is not what I meant."
        <
        UNKNOWN AUTHOR>

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        • #19
          Yabby, Before MS hit me, I had pinched nerves in both my cervical and lumbar spine. Compromised limb use (left arm and leg), tingling, and severe pain existed for many months. Neck surgery immediately resolved the cervical/left arm issues. PT eventually resolved the lumbar/left leg issues. My chiropractor, who had treated me for years, refused to continue treating me when these symptoms appeared.
          Chas
          TiLite TR3
          Dual-Axle TR3 with RioMobility DragonFly
          I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

          "I know you think you understand what you thought I said, but what I don't think you realize is that what you heard is not what I meant."
          <
          UNKNOWN AUTHOR>

          Comment


          • #20
            Originally posted by chasmengr View Post
            Yabby, Before MS hit me, I had pinched nerves in both my cervical and lumbar spine. Compromised limb use (left arm and leg), tingling, and severe pain existed for many months. Neck surgery immediately resolved the cervical/left arm issues. PT eventually resolved the lumbar/left leg issues. My chiropractor, who had treated me for years, refused to continue treating me when these symptoms appeared.
            how did they diagnose the pinched nerves? I remember years ago, I saw a naturopath (sp?) who ordered an x-ray of my neck. I only remember it so much because he asked me if I was in a car accident. When I said no, he said "are you sure?" ... thought that was odd. Of course I'd remember if I was in an accident!

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            • #21
              I don't remember exactly how dx occurred - it was a process. X-Rays and MRIs I think. Then a myelogram (dye in the spine) by the surgeon to identify exactly where to operate.

              I do remember (before the myelogram) the surgeon having me stand up straight and relaxed, then tapping me on the top of the head and asking what I felt (which I don't remember - sudden increase of left-arm tingling maybe). Whereupon he immediately agreed I would benefit from neck surgery (fusion of C6&C7).

              PS: I had been in two car wrecks the same year many years before.
              Chas
              TiLite TR3
              Dual-Axle TR3 with RioMobility DragonFly
              I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

              "I know you think you understand what you thought I said, but what I don't think you realize is that what you heard is not what I meant."
              <
              UNKNOWN AUTHOR>

              Comment


              • #22
                I have a lot of stuff going on with my neck, and various headache conditions, and peripheral nerve damage in addition to neuromuscular symptoms so I'm an oddball and understand why they're having trouble teasing things apart. But yea sounds like I'm clear as far as MS, I'm sure there would have been something in the report from them doing my thoracic and lumbar spine. I had to get the MRI to look at things before I was cleared for radiofrequency ablation. I'd forgotten about that when I first posted asking about MRIs and dx, I've only ever had one thoracic and lumbar MRI but many skull and cervical spine ones.

                OP, you may also have multiple things going on. Like the SI issues may be related, or completely unrelated to whatever is causing other symptoms etc. But if the pain is really bad I would be looking into things to get some more relief.
                Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

                Comment


                • #23
                  the SI is probably the most painful; at times the joint in the left knee can get as bad, but not too often. There's been a few times that I was on my feet for a long time, such as a wedding, and I actually started to fall b/c it was like that joint just went out or something. I'd be just standing there & boom! I'm on my way down. Luckily, there has always been a chair or something for me to grab so I didn't fall.

                  Last year, our family was getting ready to take a trip to Disneyland and I was worried about all that walking & how my SI would hold up. So I saw the NP at my doctor's office before we left & explained my concerns. She gave me a muscle relaxant to take at night. I ended up being fine on that trip & didn't really need to take too much of it. So I'm not really sure what causes it to get really bad & other times it's fairly ok.

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                  • #24
                    I had lesions on my spine and not my brain. I was diagnosed with MS. Five years later my brain presents classic MS characteristics. I am a complete spinal cord injury. I've had my blood tested twice to roll out transverse myelitis. Diagnose just completely MS

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