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Thread: After 32yrs s for me, an answer for TM?

  1. #1
    Senior Member lynnifer's Avatar
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    After 32yrs s for me, an answer for TM?

    Make America Sane Again. lol

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

  2. #2
    think this is the answer lynnifer? Are there comparable cases of TM originating now as they did in your youth? There is some link to water,lakes correct?
    cauda equina

  3. #3
    Senior Member lynnifer's Avatar
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    Not sure now. Testing taking place at conference in October.
    Make America Sane Again. lol

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

  4. #4
    Senior Member Tbone57's Avatar
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    Lynnifer, have you seen this article regarding a human trial for Transverse myelitis?

    https://multiplesclerosisnewstoday.c...ell-therapies/

  5. #5
    Senior Member lynnifer's Avatar
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    No but thank you for posting that! I'm more apt to think I have acute flaccid myelitis but same deal. THANK YOU THANK YOU THANK YOU!!!!
    Make America Sane Again. lol

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

  6. #6
    Senior Member Tbone57's Avatar
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    Your welcome, I'm glad I could bring you some hopeful news. I was quite shocked to read about a trial on such a rare disorder. I got it in 09 and I'm in wheelchair. If you hear anything else about this trial please let me know, I think I read that Qtherapeutics was going to try to get this going in 6 months

  7. #7
    We're you able to have testing in October.?

    I have been MIA.

    Had another large attack. Been in hospital. Relearning. Family and I, learning what needs to be done to gain independence back. For now, happy to be back online,

    Paint much love always everybody, C
    Non-traumatic SCI. Art, Poetry, and the Great Outdoors; these are my passions. My motto: Paint much love, always ~ Connie

  8. #8
    ck, have you been retested for possible MS? New, repeated "attacks" of TM are extremely rare.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  9. #9
    KLD,

    I have been tested for so many things. Being tested for MS back in 2015, when I was diagnosed with optic neuritis. A few months later was my first large attack when I was initially paralyzed and rehabed intensely gaining a lot.

    They were 95% certain I had Neuromyelitis Optica but I don't have antibodies for NMO

    It attacks my central nervous system like NMO. Affecting my optic nerveand spinal cord, brain not affected.

    Kicker is, I develop butterfly rashes and skin reacts to sun/ UV and other stuff what my doctor's say are Lupus type; systemic. Which is not NMO.

    My autonomic system is affected.

    Now, with this last attack, my diaphragm / respiratory muscles are compromised, I lost the ability to swallow, all trunk control, my hands. My tongue and I forget which facials nerves exactly. My speech is impaired.
    In addition to the deficits I already had.

    I'm hopeful. I have a great team working with me. On all things adaptive.

    That being said, I have had a neurogenic bladder since 2009. Cath dependent.

    In my 20s I had weird stuff, seemingly random. My blood pressure would suddenly drop sometimes I passed out. All kinds of weird stuff.

    Now they believe it's related.

    My labs get off. Potassium drops, or sodium, now creatinine? Dropped.

    Anyway, long story long, they don't have "a name" yet.

    They believe it is autoimmune. They want me to start Rituxan. They believe it is my best shot at prevention, knowing it may not work.

    We know steroids help. I have had several rounds of infusions.

    TMI????

    Maybe someone out there been there done that?
    Non-traumatic SCI. Art, Poetry, and the Great Outdoors; these are my passions. My motto: Paint much love, always ~ Connie

  10. #10
    Senior Member lynnifer's Avatar
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    No, I emailed and didn't receive a response. Perhaps because I'm in Canada?
    Make America Sane Again. lol

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

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