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

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    Distinguished Community Member agate's Avatar
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    Default Proposed 2013 revisions of the 1996 classification of MS types

    An article by 32 authors, many of them well known in MS research, has appeared in Neurology, proposing changes in the 1996 classification of MS. Perhaps the major change would be the elimination of PRMS (progressive relapsing MS) as a category.

    Excerpted from Medical News Today, May 31, 2014:

    Quote
    Defining the clinical course of multiple sclerosis

    Accurate clinical course descriptions (phenotypes) of multiple sclerosis (MS) are important for communication, prognostication, design and recruitment for clinical trials, and treatment decision-making. Researchers at Icahn School of Medicine at Mount Sinai, part of the International Committee on Clinical Trials of MS, collaborated to re-examine the standardized MS clinical course descriptions originally published in 1996 and recommend refined phenotype descriptions that include improved clinical descriptive terminology, MRI and other imaging techniques, analysis of fluid biomarkers and neurophysiology. The proposed 2013 revisions will appear in the online issue ofNeurology, the medical journal of the American Academy of Neurology.

    "Our goal for modifying the 1996 definitions is to better characterize patients with MS and provide a framework for both clinical research and ongoing clinical care," says Fred D. Lublin, MD, Director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at The Icahn School of Medicine at Mount Sinai, and the article's lead author. "These revisions should make communication with patients and among physicians clearer and should also enhance the design, recruitment and conduct of clinical trials, which will further help us understand the disease."

    ...

    The 1996 clinical course descriptions provided standardized definitions for four MS clinical courses, which included: relapsing-remitting (RR), secondary progressive (SP), primary progressive (PP), and progressive relapsing (PR). While these descriptions were believed to represent the spectrum of clinical subtypes of MS, it was recognized that the descriptions might change over time as a result of advanced imaging techniques and biological markers.

    In reconsidering the prior MS disease course descriptors, the advisory group recommends that the core MS phenotype descriptions of relapsing and progressive disease be retained, with some modifications. The consensus is that disease activity detected by clinical relapses or imaging (gadolinium-enhancing lesions or new or unequivocally enlarging T2 lesions) as well as progression of disability can be meaningful additional descriptors of either relapsing or progressing disease. Evidence of disease activity and clinical progression, which by current understanding reflects ongoing inflammatory or neurodegenerative disease, may impact prognosis, therapeutic decisions and clinical trial designs and outcomes.

    To assess disease activity, the group recommends at least annual clinical assessment and brain imaging for relapsing MS. For progressive MS, annual clinical assessment is recommended, but there was no consensus on the optimal frequency of imaging. They suggest that progression be determined annually by history or objective measure of change. Thus, the existing course descriptions should be sub-categorized based on activity or progression. For example, a patient with relapsing-remitting (RR) MS who had a new gadolinium-enhancing lesion on a current MRI would be considered to be RR-active. Conversely, "non-active" could be used the same way to indicate a patient with a relapsing course but no relapses or new MRI lesions during the assessment period.

    Inclusion of activity as a modifier of basic clinical course phenotype allows elimination of the progressive relapsing (PR) category because a PPMS patient who has an acute attack (thus fulfilling the prior criteria for PRMS) would be considered PP-active.

    Another recommendation is that clinically isolated syndrome (CIS), which was not included in the initial MS clinical descriptors, but is now recognized as the first clinical presentation of a disease that shows characteristics of inflammatory demyelination that could be MS, be included in the spectrum of MS phenotypes. Prospective follow-up of most such patients should determine their subsequent disease phenotype.

    Radiologically isolated syndrome (RIS), where incidental imaging findings suggest inflammatory demyelination in the absence of signs or symptoms should not be considered a separate MS phenotype.

    ...

    Article adapted by Medical News Today from original press release.


    The entire article can be seen at http://www.medicalnewstoday.com/releases/277490.php?tw
    Last edited by agate; 06-02-2014 at 07:04 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member SalpalSally's Avatar
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    Interesting. The RIS phenotype may do away with use of the Limbo word.
    Love, Sally


    "The best way out is always through". Robert Frost







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    It seems to me that time would be better spent in other research into cause/treatments rather than the definitions of types of MS. Changing the name from Progressive/Relapsing (which is the type I have) to Primary Progressive is just semantics and doesn't change a d@mn thing!!!

    The outcome is still the same......NO effective treatments and it took 32 talking heads... money and time wasted... to figure it out!!!

    Blessings,
    Gabriella
    Last edited by Gabriella7; 06-02-2014 at 09:35 AM.
    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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    Distinguished Community Member Howie's Avatar
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    I agree. Too much money is spent on meaningless things like this. A cure would be nice. I have some names for types of MS, but they can't be typed here.

    What hurts MS research is the sad fact that "MS theories" and "treatments" based on those theories, are too profitable for researchers and doctors.

    I've always wondered how they can have treatments for MS, but don't even know the cause.
    Roswell was a gift.

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    Distinguished Community Member agate's Avatar
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    The abstract gives a better idea of the reasons why these prominent MS researchers thought it was time to redo the categories:


    http://www.ncbi.nlm.nih.gov/pubmed/24871874

    New drugs are always being tested for MS but the process takes a long, long time. There have to be clinical trials that go through several phases. If a clinical trial is being set up, the researchers need to be able to sort out the candidates for the trial based on the type of MS the candidates have, and if the classification system doesn't fit what they've learned about MS in the last 17 years, it needs to be reworked.

    They take drug safety VERY seriously and don't want to market a drug that is going to do more harm than good.

    Even though everyone here is perfectly aware of all this, it might not hurt to mention it again....

    They still don't know much about MS, and this reclassification they're thinking about just illustrates how little they really know, IMO.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Yes, I totally agree about the fact that after all is said and done "more has been said than done". These big pharma researchers have come up with a multitude of pharmaceuticals to treat each individual symptom....of which there are many.....I think I have 20-25 different pharmaceuticals that I have tried over the past 25 years and I am still lacking an effective treatment for most of my symptoms.

    These international conferences who gather the top researchers in the field certainly need to make certain they first "do no harm"....but we patients are running out of patience waiting for answers while they banter back and forth about the classification of types of MS! MS has been around for over a hundred years and they are still changing their minds about what to call the progressive type.....should it be progressive/relapsing or primary /progressive or maybe secondary/progressive?

    Does it really matter what it is called when the outcome is the same?

    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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    Distinguished Community Member agate's Avatar
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    I don't know that the outcome is always the same. Seems to be a very wide range of possible outcomes with MS.

    I guess I'm happy to see any research at all being done on MS. In the past MS was pretty much ignored since there wasn't anything that could be done about it. Finally they're realizing that people shouldn't have to be condemned to life with a disabling chronic disorder now that they know more about genetics, the immune system, and other fields.

    The problem is that they don't yet know nearly enough, and so they have to keep on trying this or that until they get it right.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member SalpalSally's Avatar
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    I agree with you Joan. I think that within the scientist field,
    there are just too many cooks in the kitchen, keeping busy,
    doing something that may help us. Not all scientist can be
    heros and find a cure. We need a few Salks and Sabins, to
    do the heavy lifting. Bless them all for trying!
    Love, Sally


    "The best way out is always through". Robert Frost







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    The outcome is always the same in as much as......they don't know the cause of MS......hence they don't have a cure.....and all the talk about different types of MS is just that.....TALK!

    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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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Gabriella7 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    The outcome is always the same in as much as......they don't know the cause of MS......hence they don't have a cure.....and all the talk about different types of MS is just that.....TALK!

    Blessings,
    Gabriella
    I'm sure everybody here shares your frustration. Maybe the people working on it just aren't the right people. But the fact is that the disease itself is very hard to diagnose and even harder to find anything out about.

    They've been trying if that's any comfort. I just read an article finding that in 2013 alone, there were 160 clinical trials in connection with MS.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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