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Dr. Burt's HSCT study results reported in JAMA

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    #16
    Originally posted by Marco View Post
    Neurologists need to do a much better job at educating their patients about the importance and advantages of early treatment. This is when inflammation can best be controlled, minimizing damage and prolonging, or preventing, the onset of SPMS. Due to the unpredictable nature of the disease, there will always be people that could drink household cleanser, or eat 50 almonds and have no disease activity. The reality remains, on average there will be progression, and there will be disability. The best way to slow progression and fend off disability is by using a disease modifying therapy; the only scientifically proven therapy that can alter the course of the disease (especially early on).
    I agree 100% that getting on a therapy immediately is what I personally feel is the best decision in an effort to hopefully stave off progression.

    However I do not think it is a lack of the neurologists trying to educate and offer treatment. In my experience both neuros I saw advocated for me to start a medication. If you read the boards here there seem to be a resistance to taking medication or even accepting what this miserable disease can do to us.

    How many times have you heard "I have MS but it doesn't have me"? Yeah right, maybe not yet.
    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
    Anonymous

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      #17
      Ha ha ha, Marco. Consider yourself 'in' the L-fest. Let me let you in on a 'secret'. I post here because I like to hear my own voice. Uhh see my own words in print.
      I look to this site because the members on this site are the only voices worth listening to. You can only know MS if you have MS. Neurologists are nice guys and gals but they just don't know our 'hell'.

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        #18
        Originally posted by Marco View Post
        Jerry - I believe Dr. Burt has learned "enough" to quickly rule out patients that are suboptimal candidates. Then they continue to filter the candidates until only optimal candidates remain. It is my opinion that the results are so skewed towards patients with minimal disease activity they are not actually valid.
        My understanding of this trial is that Dr. Burt will only take people who have failed two DMDs, period. The criteria is very strict. Most of these secondary failures occur on heavy-hitting meds like Rix and Tysabri. I would be surprised if DMD trials contain large cohorts of PPMS and SPMS, why would they as that is not their market? And if they don't, then the Burt trial would not be a fair comparison. Burt also treats people off trial if they have such aggressive MS that it is imminently fatal, Marburg and fulminant, on a compassionate basis.

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