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Thread: Autoimmune SCI

  1. #1
    Senior Member PC720's Avatar
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    Autoimmune SCI

    i spoke to my neuro today. as it turns out i am an odd case SCI and myelomalacia is the least of my problems. I do have a bulging disc but it is not believed to have caused as much damage to my spinal cord as i currently have. i do have MS but MS is not believed to have caused the damage either. Transverse myelitis is thought to be the cause of numbness and complete paralysis.

    i asked if stem cell could aid in the reversal of the myelomalacia but he said, "No, neither reversal or any other reversal because the autoimmune response would be to just attack the spine all over again."

    well, so much for that.... does anyone know, or have an autoimmune SCI that may know of so research going on that may help? i won't be heart broken not walking but bladder and bowel recovery would be nice.

    thanks all, P

  2. #2
    Have you checked out the information on this website?

    http://myelitis.org/

    Johns Hopkins has perhaps the leading treatment and research center on TM in the world. You can get more information about their programs here:

    http://www.hopkinsmedicine.org/neuro...erse_myelitis/

    (KLD)

  3. #3
    Senior Member PC720's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    Have you checked out the information on this website?

    http://myelitis.org/

    Johns Hopkins has perhaps the leading treatment and research center on TM in the world. You can get more information about their programs here:

    http://www.hopkinsmedicine.org/neuro...erse_myelitis/

    (KLD)
    Thanks

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    Definitely sign up for the free TMA newsletters and membership. Great for the latest research and the closest support groups. There are now two TM Centers in the US: Hopkins in Baltimore and University of Texas Southwestern Medical Center in Dallas.
    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.

  5. #5
    PC720, I too have autoimmune neurological disease (started by a flu shot). Have you checked into HSCT (aka AHCT)? Autologous stem cell transplant?

    There is is a phase 2/3 clinical trial in Northwestern University in Chicago, by Dr Richard Burt. The success rate is over 90% I was told. There is a Facebook group about it too.

    For or my disease CIDP:

    http://clinicaltrials.gov/show/NCT00278629

    For MS: (this treatment is expected to go mainstream around 2022)

    http://clinicaltrials.gov/show/NCT00273364

  6. #6
    Have you thought about the phase 2/3 clinical trial done in Northwestern Univ by Dr Burt? It uses HSCT (autologous stem cell transplant) to stop the progression of autoimmune diseases. For RRMS and my disease CIDP the success rate is over 90%.

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