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Thread: no diagnosis

  1. #1

    no diagnosis

    I will try to make this as short as I can

    I started seeing my primary doctor in order to get some answers on why my left arm and toes go numb/tingly all the time. Certain movements or positions will make it worse, but it's been a daily thing for years now. As we got into talking further & I mentioned other things that have been going on ... stiffness, pain, fatigue, dry eyes, weird speech problems, etc, she ran a few tests for Lupus. I'm not sure exactly what the tests were, but the ANA titer numbers were ok so she said "it's not Lupus". Repeated the tests and after talking about some muscle weakness she referred me to a neurologist.

    Saw the neuro, who said first thing he wanted to do was order an MRI to rule out MS. So he ordered one of the brain only with and without contrast ... came back normal. So they want me to come back for another test, some kind of Nerve Conduction Study; I think it's called Electromyography.


    Up until somewhat recently, the symptoms didn't get in the way too much of daily life. I'd have good days and bad days...bad days usually meant lots of pain in the legs, sometimes enough to where I'd just have to go to bed. With 3 young kids, that just isn't an option most of the time for me. But lately, the left leg is bothering me a lot more than it used to. If I'm moving around, just doing regular housework, it doesn't take very long at all before that leg is just wore out & tired ... almost feels like something is squeezing it, like a pressure on the inside, and sometimes it'll kind of trip a little.


    My questions are:

    1) is the brain MRI enough to say no, it's not MS? if not, should I ask for the spinal MRI?

    2) has anyone ever heard of this Electromyography test, and know what they're looking for with it?

    3) possibility of Lyme's disease?

    4) what should I ask the neuro at the next appointment?


    thank you so much for listening

  2. #2
    yabby02, I have MS and all of my lesions are in the cord - none in the brain (yet - knocking on wood); this is true of 5% of MS patients - so no, an MRI of the brain is not sufficient to rule out MS. You need to have spinal MRIs, especially of the cervical and thoracic regions (MS lesions rarely appear below the level of the thoracic cord, but other lesion-inducing processes can).

    On its own, MRI does not rule MS either in or out - MRI supports clinical and laboratory findings, especially lumbar puncture. You also need to have blood tests to check for MS mimics like Lyme disease and several other conditions. Your Vitamin D levels ought to be checked, as well.

    EMG is not usually used to test for MS, but another set of nerve conduction studies (called "evoked potentials") is.

    MS, like many autoimmune processes, remains a diagnosis of exclusion - other conditions need to be ruled out, as far as possible. For example, Sjogren's syndrome often presents with dry eyes and mouth and other MS-type symptoms, so you might want to discuss that with your doctor.

    Diagnosis for symptoms such as you describe can take a long time, so be prepared to go through an exhaustive process of elimination. Best wishes to you.
    MS with cervical and thoracic cord lesions

  3. #3
    Bonnette's info is right on. I have MS with both brain and spinal-cord lesions. Yabby02, you ask excellent questions. If you're up to it, visit PatientLikeMe's MS forum. It is chock full of helpful information among the banter.

    MS is dx through the McDonald Criteria explained here.

    MRIs can miss small lesions in the brain because they image slices of the brain (like slices in a loaf of bread). If a lesion doesn't cross an MRI slice, it wont show up (distance between MRI slices is typically 3-4 mm).
    Last edited by chasmengr; 01-23-2015 at 07:25 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>

  4. #4
    Quote Originally Posted by yabby02 View Post
    My questions are:

    1) is the brain MRI enough to say no, it's not MS? if not, should I ask for the spinal MRI?

    2) has anyone ever heard of this Electromyography test, and know what they're looking for with it?

    3) possibility of Lyme's disease?

    4) what should I ask the neuro at the next appointment?


    thank you so much for listening
    1) No; yes, cervical and thoracic (I have lesions in both - C7(hands) & T7 (legs))
    2) yes; nerve response I think - I've never had one,
    3) ask doc to rule it out. Lyme and MS have very similar symptoms.
    4) McDonald Criteria; Lyme Disease; Cervical and Thoracic MRI (what strength is the MRI: measured in Tesla, 2 is common, 3 is new and provides much better imagery and closer slices); how much experience does doc have with MS; if not much, should you see (will doc refer you to) an MS specialist?
    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>

  5. #5
    Quote Originally Posted by chasmengr View Post
    ...MRIs can miss small lesions the brain because they image slices of the brain (like slices in a loaf of bread). If a lesion doesn't cross an MRI slice, it wont show up (distance between MRI slices is typically 3-4 mm.
    So true! Also, I remember my neuro saying that areas of inflammation can be present in the brain before frank lesions appear on MRI. So a negative brain MRI today might be positive next year. I had a brain MRI in 2014 and it was still negative, but as you say, that doesn't mean for sure that my brain is unaffected. Yabby02, be persistent about getting the tests you need to pin down a diagnosis. I second chasmengr's suggestion about checking out that MS forum, too.
    MS with cervical and thoracic cord lesions

  6. #6
    Senior Member ~Lin's Avatar
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    Interesting... in my case they ruled out MS after MRI. Jee, nice to know it wasn't truly ruled out.

    About the EMG, they would be looking for peripheral type nerve damage. Are they only doing your arm or your legs as well? An EMG is body part specific, so for example they could only be doing the one arm with symptoms, or multiple limbs if thats requested. I've never had an EMG on my legs but have had many on my arms.
    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. #7
    Quote Originally Posted by ~Lin View Post
    Interesting... in my case they ruled out MS after MRI. Jee, nice to know it wasn't truly ruled out.
    I hear you. My primary care doc initially told me that a negative brain MRI ruled MS out, but he sent me to a neurologist because he couldn't figure out what was wrong. The neurologist took a detailed history and ordered a battery of tests to exclude other conditions. Spinal MRIs revealed many scattered lesions, and that - combined with the other test results and clinical evaluation - clinched the diagnosis.

    A complicating issue, is that one can have MS in addition to other conditions - as the neuro explained it to me, MS doesn't indemnify a person from having Lyme disease, West Nile Virus, Transverse Myelitis, neuromyelitis optica (which used to be considered an MS variant) or lupus along with MS.

    It's important to get as accurate a diagnosis as possible, because some of the ailments that mimic MS (or accompany it) are very amenable to treatment. Periodioc reevaluations are worthwhile, since better diagnostic tools and technologies are being developed as we speak.

    Edited to add: The National MS Society has an excellent website - here's a link to the page about diagnosis: http://www.nationalmssociety.org/Sym...agnosing-Tools. Hope you get some answers soon, yabby.
    Last edited by Bonnette; 01-24-2015 at 11:47 PM.
    MS with cervical and thoracic cord lesions

  8. #8
    not sure if this would be helpful or not, but here are the results from the MRI:

    Narrative

    MRI BRAIN W WO CONTRAST 1/14/2015 09:01:33

    HISTORY: Disturbance of skin sensation, speech disturbance

    COMPARISON: None.

    TECHNIQUE: Routine multiplanar multisequence pre and post contrast MRI of the brain was performed. 19 ml Multihance given intravenously.

    FINDINGS:

    Brain parenchymal signal is normal. No mass, midline shift or extraaxial fluid collection. Ventricles have normal size and configuration. Corpus callosum, pituitary gland, tectum, and pineal region are within normal limits. No cerebellar tonsillar
    ectopia. Globes and orbital contents appear normal. Normal intracranial flow voids are observed. No diffusion restriction.

    Expected enhancement of the pituitary gland post contrast. No abnormal brain parenchymal or dural/leptomeningeal enhancement.

    Impression

    IMPRESSION:

    Normal pre and post contrast MRI of the brain.


    Component Results

    There is no component information for this result.


  9. #9
    Yep, normal brain MRI, but it still doesn't rule out MS.
    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. #10
    Senior Member ~Lin's Avatar
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    Do you need contrast to diagnose/rule out ms or is a regular mri enough? I wasn't thinking when I posted before, but I have had spinal mri for my entire spine due to joint issues but no contrast, so I think I'm safe... I did get a dx of a movement disorder to explain my neuromuscular symptoms, but that's not all and due to skull and spine complications with my genetic disorder it's possible the movement disorder is secondary to that happening. I'm waiting to see a neurosurgeon, I was referred back in September and recently was called and told I'm scheduled for.... July. And my geneticist wants me to see a spine specializing ortho, my neurologist said he doesn't do spine. He doesn't seem concerned at all though about possibilities like MS like other Dr's initially had, I've only seen him a few times though. He did dx the movement disorder first time, said it was rare (Primary Myoclonus) and that's why previous neuro was stumped.

    Sorry for the tangent! But to use myself as an example, my undiagnosed/now partially diagnosed issues were recognized as a concern around 3 years ago. The movement disorder part was just diagnosed this past June. You're probably in for a long haul, unfortunately! Have to keep advocating for yourself though, if I was better at that things may have gone faster. But I also have other conditions so it's tough teasing out what doesn't fit and pursuing it.
    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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