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

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  • After 32yrs s for me, an answer for TM?

    https://www.ncbi.nlm.nih.gov/gene/137492

    A rare genetic mutation?

    https://myelitis.org/genetic-mutatio...erse-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

  • #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

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    • #3
      Not sure now. Testing taking place at conference in October.
      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

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      • #4
        Lynnifer, have you seen this article regarding a human trial for Transverse myelitis?

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

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        • #5
          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!!!!
          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

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          • #6
            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

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            • #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

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              • #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.

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                • #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

                  Comment


                  • #10
                    No, I emailed and didn't receive a response. Perhaps because I'm in Canada?
                    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

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                    • #11
                      lynnifer

                      i am sorry. i hope you do hear eventually.

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

                      Comment


                      • #12
                        Originally posted by Tbone57 View Post
                        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
                        Latest Q therapeutics and Reprocell

                        https://globenewswire.com/news-relea...REPROCELL.html

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                        • #13
                          Sounds very exciting! I wonder how this affects the speed of the trials.
                          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

                          Comment


                          • #14
                            "Under the accelerated approval pathway permitted by Japan’s PMDA, this unique regulatory process, designed to move cell and gene therapies to human use more rapidly than in most countries, will enable clinical data and conditional product approval for application to regulatory filings worldwide.
                            http://spinalcordresearchandadvocacy.wordpress.com/

                            Comment


                            • #15
                              https://globenewswire.com/news-relea...-Myelitis.html

                              September 26, 2018 06:00 ET | Source: Q Therapeutics, Inc.
                              FDA DESIGNATION WOULD PROVIDE 7 YEARS OF MARKET EXCLUSIVITY UPON MARKET APPROVAL OF Q-CELLS?

                              SALT LAKE CITY, Sept. 26, 2018 (GLOBE NEWSWIRE) -- Q Therapeutics, Inc., a developer of clinical-stage cell therapies for central nervous system (CNS) diseases announced that its Q-Cells? product (human glial restricted progenitor cells and their progeny) has received the FDA’s orphan drug designation for the treatment of transverse myelitis.

                              “Orphan drug designation of Q-Cells for transverse myelitis is a great step toward our goal of advancing glial cell therapy for demyelinating and neurodegenerative diseases,” said Steven Borst, President and CEO of Q Therapeutics, Inc. “People who are hit hardest by transverse myelitis face a lifetime of paralysis and wheelchair confinement. Building upon the remarkable, disease-modifying results that have been achieved in pre-clinical studies, we aim to someday reverse that paralysis, not only in these patients, but all who have disabilities that result from damaged or destroyed myelin.”

                              Transverse myelitis (TM) is a severely debilitating autoimmune disease that destroys key components of the spinal cord and leads to total paralysis in many of the people it afflicts. It is similar to multiple sclerosis, but TM paralyzes healthy people over a very short period of time – sometimes just 24 to 36 hours – when the immune system attacks the myelin sheaths surrounding nerve fibers. No effective treatments yet exist to restore myelin once it has been destroyed.

                              Last year, collaborators at The Johns Hopkins University showed that Q-Cells replaced missing myelin in mice, restoring the animals to normal function and life expectancy. These robust data supported swift FDA clearance of Q Therapeutics’ proposed TM clinical trial. Similar experiments in animal models of spinal cord injury also have demonstrated the restorative capabilities of Q-Cells.

                              Orphan Drug Designation is granted to drugs and biologics intended for the safe and effective treatment, diagnosis or prevention of rare diseases/disorders that affect fewer than 200,000 patients in the United States, or that affect more than 200,000 persons but are not expected to recover the costs of developing and marketing a treatment drug.

                              The FDA Office of Orphan Products Development (OOPD) mission is to advance the evaluation and development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases and conditions. In fulfilling that task, OOPD evaluates scientific and clinical data submissions from sponsors to identify and designate products as promising for rare disease and to further advance scientific development of such promising medical products. The office also works on rare disease issues with the medical and research communities, professional organizations, academia, governmental agencies, industry and rare disease patient groups.

                              About Q Therapeutics, Inc.

                              Q Therapeutics is a clinical-stage company developing adult stem cell therapies to treat debilitating CNS disease and injury. The Company has patented processes to derive and manufacture glial-restricted progenitor (GRP) cells from any tissue source, including iPSC. The Company’s first therapeutic product candidate, Q-Cells?, is intended to restore or preserve normal CNS activity by supplying essential nerve cell functions. Q-Cells may be suitable to treat a range of CNS disorders, including demyelinating conditions such as multiple sclerosis (MS), transverse myelitis (TM), cerebral palsy and stroke, as well as neurodegenerative diseases and injuries such as amyotrophic lateral sclerosis (ALS), spinal cord injury, traumatic brain injury, and Alzheimer’s disease. Q Therapeutics has obtained Investigational New Drug (IND) clearance from the FDA for Phase 1/2a trials in both ALS and TM for its adult cell product, Q-CELLS. In addition, the FDA has granted orphan drug status and fast track designation to Q-CELLS for ALS. For more information, see www.qthera.com....
                              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

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