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Thread: Proposed 2013 revisions of the 1996 classification of MS types

  1. #11
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    I'm well aware that it takes a long time to even get a diagnosis. It took 25 years from my first symptom and a lot of wrong guesses before I was given a MRI and diagnosed as "definite MS" by a MS neurologist and after years of suffering.... I was told it was Progressive/Relapsing and there are no effective treatments. In fact the symptoms are managed with drugs that were developed for other diseases.

    Agate, Do you know if any clinical trials have been done on patients who are classified as progressive? I have not been able to find any.

    Blessings,
    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  2. #12
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Gabriella7 View Post
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    I'm well aware that it takes a long time to even get a diagnosis. It took 25 years from my first symptom and a lot of wrong guesses before I was given a MRI and diagnosed as "definite MS" by a MS neurologist and after years of suffering.... I was told it was Progressive/Relapsing and there are no effective treatments. In fact the symptoms are managed with drugs that were developed for other diseases.

    Agate, Do you know if any clinical trials have been done on patients who are classified as progressive? I have not been able to find any.

    Blessings,
    Gabriella
    You'll find a few here:

    http://www.nationalmssociety.org/Res...S-Trial-Alerts
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  3. #13
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    It does broaden the playing field of volunteers (guinea pigs) if one of the classifications is eliminated so that more patients qualify for clinical trials. After over 25 years of trials and errors with medications I would not volunteer to be a guinea pig but I do applaud those who do. Who knows something of benefit may come out of it but it will not be a cure. The cure is only going to come from a researcher who is trying to find the cause of MS and is not working for BigPharma who is only looking after Wall Street!

    Does anyone know of a researcher who is truly searching for the cause of MS? I would like to send a donation.

    Blessings,
    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  4. #14
    Distinguished Community Member Cherie's Avatar
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    Normally, I am so on top of the news coming out of the consortium and ACTRIMS conventions but this year, due to family crises, was not able to be. Thank you for posting this. It helps to take these things in small bites now instead of just looking at the mountain of stuff written and spewed out this past week at Convention.

    At least they are no longer talking a "benign MS" category! That was disastrous and hurt so many of us preventing us from being able to start on therapies that ultimately helped.

  5. #15
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    Cherie, I am also glad to hear the "benign" category of MS has been eliminated. I heard that from the neuro who just a few months after telling me my MRI showed multiple lesions in the periventricular area of my brain and I had "definite" MS and that it must be "benign".

    I was too dumb to question that statement....and wondered how in the world could anything "definite" be called " benign"....but, I did change to another neuro (with years more experience) in the practice who changed the name to progressive/relapsing which was just as bad as it was the "rare" one. Now I don't know what it will be changed to with the new revisions.

    Nothing will change as far as treatments go......

    Blessings,
    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  6. #16
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    Gabriella,

    There is a family here of adult sons (or mostly sons) who lost one parent to MS and one to Alzheimer's disease. They raise money and fund research on the cause of these diseases. And I can't remember their family name.
    ANN
    There comes a time when silence is betrayal.- MLK

  7. #17
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by stillstANNding View Post
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    Gabriella,

    There is a family here of adult sons (or mostly sons) who lost one parent to MS and one to Alzheimer's disease. They raise money and fund research on the cause of these diseases. And I can't remember their family name.
    ANN
    ANN, might that fund-raising effort be this?

    http://mccourtfoundation.org/about-us
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  8. #18
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    Yes, it is the 7 McCourt brothers. They have educational events in the Boston area.

    I do see on the home page that the do receive money from sponsers and some of those look like drug companies.
    There comes a time when silence is betrayal.- MLK

  9. #19
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    Thanks Ann for the information about the foundation the McCourt family has established to raise money for research. It appears all these neurological diseases have a familial or environmental link in some families. In my family....my Mother died of Alzheimer's, I have MS, my youngest son was diagnosed with Parkinson's at age 35 and my husband died last year of ALS.

    I have given some thought to starting a foundation to raise funds for all of these diseases as there has got to be a link of some sort. I have Dr. Howard Weiner's book "MS Cure" and appreciate all the research he has done over these many years.

    I hope we see a "cure" in our lifetime.

    Blessings,
    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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