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Thread: no diagnosis

  1. #11
    Quote Originally Posted by ~Lin View Post
    Do you need contrast to diagnose/rule out ms or is a regular mri enough?
    Contrast makes lesions easier to see, especially if they are actively inflamed at the time of MRI; new lesions, particularly, light up on contrast, which is why doctors typically order MRIs with contrast during periods of exacerbated symptoms. But lesions are visible without contrast. I have had numerous MRIs of the brain and cord, some with contrast and some without, and in all cases the same lesions were identified. My neuro told me that I could refuse contrast for followup MRIs (absent exacerbation) if I was concerned about my kidneys, as the radiologist would still be able to compare studies.

    It sounds like you're in excellent hands, Lin, you've had very thorough workups with appropriate specialists. Neurological diagnosis is a maddening process, it usually takes a long time to narrow things down and some docs give up too soon - but things seem to be going in the right direction for you. If your doctors are not concerned about your having MS, then it's probably not an issue for you.
    MS with cervical and thoracic cord lesions

  2. #12
    I too have normal MRI'S But on clinical impression alone was diagnosed with MS
    T6 incomplete from MS and an aortic aneurysm surgery that went bad.

  3. #13
    I have an appointment next week, and I think I'm going to go ahead and ask for the spinal MRI if it goes all the way down. I've had a lot of pain off and on for years in the hip area, like kind of close to the tail bone. And this week it's just been almost constant that it hurts, as well as down into my left leg. I don't know if they can see what's causing the pain from an MRI but I just don't want to hurt anymore. And maybe they can figure it out and I'll feel better, or maybe they'll know what it is and there's nothing to do for it ... but at least I'd have an answer.

  4. #14
    I forgot to ask; can sacroiliac joint pain be from all this, too? I've seen my chiropractor many, many times for this and the treatments do nothing to help the pain. But he said that's the joint that is the most painful for me....and interestingly, also on the left side. All my pain, numbness, tingling, etc, is all on the left side.

  5. #15
    Pain - sometimes severe and excruciating, of several types (peripheral, central, visceral, etc.) - can accompany cord damage, whether due to trauma or disease. Everyone presents a little differently and no two people have precisely the same experience, so you will need to be guided by specialists familiar with your history. As others here have said, be your own advocate. You must be an equal partner on your medical team. Educate yourself at each step along the road to diagnosis (and treatment, eventually). The National MS Society website (see link provided earlier in this thread) is a great place to begin, because it contains detailed information that applies not only to MS, but to the many other conditions that need to be ruled out.

    Sometimes MRI suggests sources of pain, and sometimes not. People can experience great pain, with no pathology evident on MRI; others with worrisome findings on MRI are symptom-free. There's no 1:1 correspondence with any of this, you'll need to go through a winnowing process, with many frustrations and ups and downs along the way.
    MS with cervical and thoracic cord lesions

  6. #16
    Senior Member ~Lin's Avatar
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    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.

  7. #17
    Quote 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.

  8. #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 at 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>

  9. #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>

  10. #20
    Quote 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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