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Thread: Transverse myelitis with normal spinal MRI

  1. #1

    Transverse myelitis with normal spinal MRI

    I am looking for any advice or information/research papers regarding transverse myelitis with normal spinal MRI. My symptom onset and damage are consistent with TM and have loosely been diagnosed as having it by neurologists. I have never received treatment at onset due to the clear scans. I have spoken to people who have been diagnosed by symptoms alone but my neurologists seem sceptical about it and have even questioned whether my numbness and pain from the waist down is psychological.

    I have been found to have anticardiolipin antibodies and suffered daily severe migraines for 3 months just before my TM. The levels have steadily dropped over time, they were 22, 19, and then 14 of the IgM antibody only. I know I have other health problems not consistent with TM (visual snow, hyperacusis, petechaie...) I actually feel something else is going on which may have caused it. I find it odd that after a month my symptoms seemed to almost resolve themselves, my sensations returned, leg fatigue gone, all I had was the sensation of water going up and down my legs but only for a month. Then symptoms slowly came back and numbness has actually been worse in some areas.

    I would really appreciate some insight on my case which has been insensitively brushed off as an 'enigma'

  2. #2
    I'm not a doctor, but having gone through an exasperating diagnostic process myself, your symptoms are not sounding like TM to me. There are many, many TM and MS mimics, and each of them has to be ruled out before even a presumptive diagnosis can be made. So I would seek a second neurological opinion, and make certain that all diagnostic bases are covered - including MRIs of the brain and full spine (with and without contrast), lumbar puncture, extensive bloodwork and whatever else a competent neurologist deems appropriate.

    Edited to add: the visual and migraine issues you're having, along with petechiae, make me wonder about blood and optical syndromes, as well. Even if you've had what seems to be a thorough workup, don't give up until you find out what's wrong - there might be treatments available for at least some of what's going on.
    Last edited by Bonnette; 03-14-2012 at 03:30 PM.

  3. #3
    Senior Member lynnifer's Avatar
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    Try to seek out an appointment in a bigger medical centre ... where were you that the person said this could be psychological?

    They told me that at age 12 too .. when I was laying on a stretcher completely paralyzed from the waist down and not responding to needle pricks on the skin below my waist. It was Transverse Myelitis.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  4. #4
    Thanks for the replies. Bonnette I am thinking that too.. I understand I have a lot of differences and additional symptoms but I really think I have another autoimmune disorder which may have caused TM. The day it happened I had the beginnings of the numbness starting on my bum cheeks then spread down my legs, I then had excruciating pain down my legs, crotch and back. Eventually my legs went very heavy and although I could walk it was a struggle. I have a clear line of damage from just above my hip bones downwards. In the first couple of weeks I had no vibration sensation on my hip bones, this thankfully improved.

    I've had a pretty extensive work up, MRI of entire spine and brain (though without contrast) I've just had a more thorough MRI of lumbar with contrast but this has been 8 months on (and still not got results). Lumbar puncture which was clear. I've had a VEP and SEP, VEP normal still waiting for SEP results.

    Lynnifer that is shocking how you were treated, it really does not surprise me how negligent medical professionals can be and its scary!! I thankfully have an upcoming appointment to see Dr A. Jacob at a specialist neuro centre in Liverpool UK as I understand he is an expert in this area. I feel like I've been let down by my local neurologists and medical doctors, yes I'm a complicated case but why doesn't this spark an interest in them any more considering they did choose that profession. They've taken the viewpoint that time will tell what is wrong with me.. basically wait for something else to go wrong! My haematologist wont treat me for antiphospholipid syndrome until I have a clot...! I'm 24 and trying to get on with my life but they never consider that.

    I'm paying to be tested by a private clinic to be tested for Lyme as I do have a lot of symptoms and can not find anything else encompassing all that I have going on. Lyme can cause TM, anti cardiolipin antibodies, tinnitus, hyperacusis, migraines, dizziness.... maybe that is it

  5. #5
    Super Moderator Sue Pendleton's Avatar
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    Lupus can also lead to other autoimmune problems including TM and its branch offs like Devics, ADEM, optica neuritis. Yes, you need a neurologist willing to play bloodhound and might be able to work with someone in the NHS to do tests to try and keep your expenses within reason. Have you had a regular old xrays to see if you broke a vertabrae that pressed on something temporarily and is back?
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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