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Where are the 'promising' new treatments?

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    Where are the 'promising' new treatments?

    I know that I have been pretty vocal on this board about PPMS and SPMS being 'orphaned' as far as treatments and clinical trials go. It doesn't help that Medday's press releases, last month, just disappeared. Where is the positive information on all of the efforts to rebuild myelin or any efforts to relieve the suffering of those with progressive MS. Come on...Hope doesn't get me a ham sandwich. What research is actually progressing ? My PPMS is progressing severely and it is killing me. Isn't this site supposed to spread the news of everything MS related? I find that I don't get very much 'new ' info from MS World for long periods of time.

    #2
    I hear you, Jerry! There is a website called Multiple Sclerosis News Today that has a weekly newsletter that you could subscribe to http://multiplesclerosisnewstoday.com/ They list clinical trials that are going on, approved and experimental therapies, etc. and even a place where you can contact them. It's worth a try to email them and voice your concerns about more info about 'promising' new treatments for PPMS!

    MSWorld is an organization designed to offer support and end isolation for all of us. We are "patients helping patients", so we're all in the same boat learning what we can. We collectively spread the latest MS news. Do you subscribe to the MSW newsletter or check the NMSS, or MSF or MSAA websites regularly? There are newsworthy articles and studies being followed there.

    Hang in there - studies and trials take a long, long time - years!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      Yes Seasha, I checked all of those sites that you mentioned. Nearly every day. And what a coincidence, I just signed up with multiple sclerosis news, today! And I realize that MS World .org is all about 'patient helping patients' . The slogan should include the words 'exercising extreme patience' ! Otherwise, I am always trolling for some new developments posted on the web .
      Can one say 'tilting at windmills'?

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        #4
        Originally posted by JerryD View Post
        Yes Seasha, I checked all of those sites that you mentioned. Nearly every day. And what a coincidence, I just signed up with multiple sclerosis news, today! And I realize that MS World .org is all about 'patient helping patients' . The slogan should include the words 'exercising extreme patience' ! Otherwise, I am always trolling for some new developments posted on the web .
        Can one say 'tilting at windmills'?
        "Patients Helping Patients, Exercise Extreme Patience." I love it!! LOL
        Katie
        "Yep, I have MS, and it does have Me!"
        "My MS is a Journey for One."
        Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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