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Thread: Important Question for Dr. Young.

  1. #31
    Quote Originally Posted by Scaper1 View Post
    What might someone with a very high and complete injury expect, theoretically anyway?
    Scaper1,

    I am not sure that a very high level of injury, i.e. C1/2 or C2/3, would necessarily be an obstacle to recovery if therapy were to regenerate the spinal cord. Motor recovery might take longer because the "downward" distance for motor axons to grow is longer. However, the "upward" distance for sensory axons to grow would be shorter and therefore sensory recovery should occur faster. In any case, we will not know for sure until we try some regenerative therapies and see the recovery patterns. I hope that we can have this discussion when this happens.

    Wise.

  2. #32
    Quote Originally Posted by keeping on View Post
    Wise, if myelin disruption is in two differnt areas, due to an illness ; an opposed to a more defined area as per an accident will your therapy apply? Do you think that Ampyra is worht trying? Thanks in advance

    keeping on
    I don't know what you mean when you say "your therapy". Are you referring to umbilical cord blood and lithium? This is simply the first combination therapy that ChinaSCINet is testing. We will be testing many others, hopefully, in the future.

    Umbilical cord blood cell transplants and lithium will likely be a regenerative therapy. I don't know whether it will stimulate remyelination or not. The cells are transplanted around the injury site and the goal is to stimulate regeneration across the injury site. It is not, at least intentionally, a remyelinative therapy.

    Wise.

  3. #33
    Yea Wise, it is somewhat confusing. I thought that remyelination was necessary for proper conduction of nerves. I hope this trial will be an upgrade to many pateints existing condition. what do you think about Ampyra? I've talked to several patients that are taking it. They all have been diagnoised with ms. I know for a fact that 2 of them have seen dramatic improvement.

    keeping on

  4. #34
    Quote Originally Posted by Wise Young View Post
    I hope that we can have this discussion when this happens.

  5. #35
    Quote Originally Posted by keeping on View Post
    Yea Wise, it is somewhat confusing. I thought that remyelination was necessary for proper conduction of nerves. I hope this trial will be an upgrade to many pateints existing condition. what do you think about Ampyra? I've talked to several patients that are taking it. They all have been diagnoised with ms. I know for a fact that 2 of them have seen dramatic improvement.

    keeping on
    Keeping on,

    I should first say that I am one of the founders and on the Board of Directors of Acorda Therapeutics, which makes Ampyra. Dr. Andrew Blight discovered the beneficial effects of 4-aminopyridine in my laboratory at NYU in the late 1980's and it was tested in Canada in people with spinal cord injury. While early studies suggested that the drug was helpful to people with chronic spinal cord injury, only a minority of people showed a beneficial effect whereas the drug has much more robust effects in more people with multiple sclerosis.

    Two phase 3 trials carried out in the mid-2000's revealed that the drug did not significantly improve spasticity in people with chronic spinal cord injury. This is unfortunate because, like you, I also know some people who showed beneficial effects of 4-aminopyridine. The drug proved to be effective in improving walking in people with multiple sclerosis (MS). The FDA approved the drug for treating people with MS only.

    Regarding myelination, it is true that myelin is necessary for long tract axons in the spinal cord to function properly. On the other hand, there are oligodendroglial precursors in the spinal cord that will remyelinate axons. We know that these cells are there and will remyelinate spinal cord because most people with intermittent/relapsing MS will demyelinate and remyelinate without cell transplants.

    The question is whether the transplanted oligodendroglial progenitor cells will make a difference in the rate and extent of recovery when transplanted during the first 2 weeks after injury. I don't know if Geron is planning to do any chronic spinal cord injury clinical trials with these cells.

    Wise.

  6. #36
    I've read that bones "change shape" after years of sitting.
    Is it possible that once people are able to stand for longer
    periods of time that their bones return to the correct shape?

    People may not be able to walk just from the deterioration in
    their bones.

  7. #37
    Wise, thanks fo ryour response. My case was somewhat differnet to other spinal problems. As I've said in the past I had Morvan's syndrome and atouimmune respinse to cancer of the thymus. Ultimately, my neuro said he'see;s the ultimate diagnosis as transverse myelits. I've gained strength and some mobility by exercising rigoursly everyday. But no standing and walking without arms and wlkaer. No balance . Ampyra is something I've looked into and just wondering if it could affect my condition. My neuro said I have some myelin missing at the point of tm and some a little below. Anyway believing in what you are doing for us and hope for something for us all.

    keeping on

  8. #38
    Quote Originally Posted by keeping on View Post
    Wise, thanks fo ryour response. My case was somewhat differnet to other spinal problems. As I've said in the past I had Morvan's syndrome and atouimmune respinse to cancer of the thymus. Ultimately, my neuro said he'see;s the ultimate diagnosis as transverse myelits. I've gained strength and some mobility by exercising rigoursly everyday. But no standing and walking without arms and wlkaer. No balance . Ampyra is something I've looked into and just wondering if it could affect my condition. My neuro said I have some myelin missing at the point of tm and some a little below. Anyway believing in what you are doing for us and hope for something for us all.

    keeping on
    Keeping on,

    Thanks. As you know, Morvan's syndrome is an autoimmune disease that manifests muscle pain, sweating, and disordered sleep. It is associated with thymoma (a tumor of T-cells, that make antibodies). The fact that you have transverse myelitis (TM) on top of this not surprising because TM is often associated with immune conditions (such as vaccines, etc.) and autoimmune diseases such as systemic lupus erythematosus.

    TM is simply a descriptive term that means that the spinal cord has had an inflammatory condition that involves a cross-sectional level. The neurological loss may be due to demyelination, loss of axons, or even loss of neurons. The last would be associated with flaccid loss of muscle function and absence of spasticity. On the other hand, TM may also result from demyelination. It is entirely possible that you have demyelination and Ampyra should be beneficial in such a situation. Your doctor may want to consider a trial course of the drug.

    Wise.

  9. #39
    Wise, I've been accepted by Acorda for a trial. I'll be starting soon and see what happens. the Morvan's syndrome caused inflammation along my spinal column and was hard to diagnose. the tumor was removed after ayear of diagnosis. I'm no longer taking cellcept and will report what I find. Thank you very much and hopefully your therpy's will be successful for all chronics. Your efforts have almost single handily have given hope to people around the world. the balls rolling and it's not going to stop. By the way I have spasticity and some nerve and muscle fundtion.

    keeping on

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