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    New national MS registry announced by US MS Society

    A national MS registry (for the US) has been launched by the National MS Society. If you're interested in finding out more, here's a link:

    Only registered and activated users can see links., Click Here To Register...

    Also this, from PR Newswire:

    Only registered and activated users can see links., Click Here To Register...
    Last edited by agate; 10-21-2017, 05:07 PM.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

    #2
    Well, Howie and maybe others, you have to have a neuro to be part of this registry. I'm going to sign up for it if the neuro agrees. Might as well contribute something to science by being studied, as long as I don't have to take anything. Or go anywhere. Or lay out any funds.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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      #3
      Originally posted by agate View Post
      Well, Howie and maybe others, you have to have a neuro to be part of this registry. I'm going to sign up for it if the neuro agrees. Might as well contribute something to science by being studied, as long as I don't have to take anything. Or go anywhere. Or lay out any funds.
      Then what's the point, to know how many are willing, or able to register, and justify giving the survey takers paychecks? And I just ate, and am still grumpy, but think how bad I would have been without a good meal!
      "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

      Albert Einstein

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        #4
        This is what the welcoming e-mail had to say:

        Our registry collects data from both patients and their neurologists. As such, we contract with neurology practices and they enroll eligible patients in the registry. If you are interested in participating, please pass our information (along with your interest) to your neurologist.
        Seems a bit odd because many with MS don't have neurologists. They go to their family doctors or internists but they still have MS.

        An MS registry isn't capturing all of the people with MS if it limits its registrants to patients of neuros, seems to me.

        The person in charge of it happens to be a neurologist.

        And I just ate, and am still grumpy, but think how bad I would have been without a good meal!
        That's a thought I'd rather not have. Hope you have plenty of food to last through till November 3.
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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          #5
          That pasta I made today will last until Nov. 3rd, maybe beyond. I used the really small macaroni style noodles, and really lean ground turkey. It was good, and ALMOST put me to sleep, but I bounced back.

          I've already started my shopping list for next month. I've paid all my bills, and even gave $10 to Wikipedia. And I have more left over than I usually have. I've triple checked, and it all worked out. I'll take it!
          "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

          Albert Einstein

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            #6
            Don't let it burn a hole in your pocket. The 3rd is a way off yet.
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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              #7
              Here's how I count the days until payday. Today is over, so it doesn't count. And payday just requires a wakeup, so there are 9 days until payday, one week and 2 days. It's all downhill now!
              "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

              Albert Einstein

              Comment


                #8
                But Howie, not to put too fine a point on it, but that comes out to 10 days using your system.
                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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                  #9
                  9 days, and a wake up! It just turned tomorrow!
                  "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

                  Albert Einstein

                  Comment


                    #10
                    Wrong, at least from my standpoint. It's 11:25 PM here.

                    I'm using those new emoticons more these days. These new computer glasses I have make it possible to see them better.
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

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