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Useful Websites (posted by David Hosobuchi, 10/2006--Updated 1/2018)

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    #31
    Originally posted by BBS1951 View Post
    Agate: my neuro said IVIG is a DMT. And Rituxan is a DMT.
    I'm still tinkering with this thread and am glad that you're speaking up. I wasn't sure what to do about those two drugs but think I've found a way of including them without making everything too complicated.

    The MS Society lists IVIG under treatments for relapses. Maybe it's disease-modifying as well but the medical community hasn't decided to say that it is yet.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

    Comment

      #32
      This thread is now as up to date as Moderator 7 and I could get it. I hope people will find it useful.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

      Comment

        #33
        Neurology Now, mentioned in posts #2, 6, and 28 in this thread, has changed its name to Brain and Life. This free periodical is available for the asking, and you can have it sent in the mail and/or online by e-mail. Sometimes there is useful information about MS in it.

        Only registered and activated users can see links., Click Here To Register...
        Last edited by agate; 04-20-2018, 11:42 AM.
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

        Comment

          #34
          Thanks Agate, I signed up for my own subscription.
          s
          Jendie
          I've been a member of this forum during its different incarnations since I was dx in 9/98

          Comment

            #35
            The MSAA 2018 Research Update:

            Only registered and activated users can see links., Click Here To Register...
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

            Comment

              #36
              Useful Websites (posted by David Hosobuchi, 10/2006--Updated 1/2018)

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

              ECTRIMS main site: Only registered and activated users can see links., Click Here To Register...

              ECTRIMS library home page: Only registered and activated users can see links., Click Here To Register...
              Last edited by Mike Weins; 06-18-2018, 10:49 PM. Reason: added additional links
              Linda~~~~

              Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

              Comment

                #37
                Hospital ratings (US)

                This site was highly recommended in the book American Sickness by Elisabeth Rosenthal, MD. You can look up all of the hospitals within a specified distance from your location and see ratings for them. You don't have to register at the site to see the ratings.

                Only registered and activated users can see links., Click Here To Register...
                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                Comment

                  #38
                  The MSAA 2019 research update:

                  Only registered and activated users can see links., Click Here To Register...
                  SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                  Comment

                    #39
                    The MSAA will apparently be issuing MS research updates every other month. Here is the research update for July 2019:

                    Only registered and activated users can see links., Click Here To Register...
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                    Comment

                      #40
                      More MSAA Research Updates:

                      September 2019


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

                      November 2019


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

                      January 2020

                      Only registered and activated users can see links., Click Here To Register...
                      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                      Comment

                        #41
                        Neurology Now has changed its name. It is now called Brain and Life and is still available for free. It is a publication of the American Academy of Neurology. It often has articles about MS.
                        Brain and Life Magazine
                        https://www.brainandlife.org
                        Last edited by agate; 03-28-2021, 06:31 PM.
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                        Comment

                          #42
                          COVID-19 (Coronavirus) Resource Center
                          https://www.brainandlife.org
                          This page is dedicated to sharing with you the most trusted information from the neurology community about COVID-19 (Coronavirus).
                          "The Most Determined Win!"

                          ” If Windmills do indeed cause cancer, wouldn’t spinning them backwards cure it?” 🤪
                          • 2 likes

                          Comment

                            #43
                            Good up-to-date information on housing options from the MS Society--though it is a .pdf file:

                            https://www.nationalmssociety.org
                            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                            Comment

                              #44
                              The following link is to set up calendar events (it's a subforum of the MS forum).

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

                              Please note that all events will be placed into one calendar that anyone can see. If I figure out how to create a calendar for each forum that wants one I will
                              Question: Why can't I post links or pictures?
                              Question: Why can't I have a signature, avatar, or profile picture?
                              Question: What's wrong with my account?

                              Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

                              It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

                              Step 1 - log in
                              Step 2 - click on the "settings" link
                              Step 3 - click on the "edit ignore list" link on the left side of the screen
                              Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
                              Step 5 - click the "ok" button on the right of the screen

                              Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

                              Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

                              Comment

                                #45
                                The NARCOMS 2021/2022 newsletter, NARCOMS Now, has published a list of brain bank resources for those with MS (and often other neurological conditions) who would like to donate their brain to science when they die. Here is the list, with a couple of updates:

                                US:


                                National Multiple Sclerosis Tissue Repository Network
                                Only registered and activated users can see links., Click Here To Register...
                                mscenterneuro@cumc.columbia.edu


                                Harvard Brain Tissue Resource Center
                                McLean Hospital
                                Only registered and activated users can see links., Click Here To Register...
                                hbtrc@mclean.harvard.edu

                                Cleveland Clinic Brain and Spinal Cord Donation Program
                                Only registered and activated users can see links., Click Here To Register...
                                elderm3@ccf.org


                                Human Brain and Spinal Fluid Resource Center
                                Only registered and activated users can see links., Click Here To Register...
                                310-268-3536


                                Multiple Sclerosis Tissue Repository
                                University of Illinois Medical Center at Chicgo
                                Only registered and activated users can see links., Click Here To Register...
                                312-996-5763


                                Oregon Brain Bank
                                Oregon Health & Sciences University
                                Only registered and activated users can see links., Click Here To Register...
                                503-494-0100


                                Rocky Mountain MS Center Tissue Bank
                                University of Colorado Denver
                                Only registered and activated users can see links., Click Here To Register...
                                303-788-4030 ext. 120


                                NON-US:

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


                                Maritime Brain Tissue Bank
                                Dalhousie University
                                Only registered and activated users can see links., Click Here To Register...
                                902-494-1551


                                Multiple Sclerosis Society Tissue Bank
                                Division of Brain Sciences, Imperial College London
                                Only registered and activated users can see links., Click Here To Register...
                                +44 (0) 20 7594 9734


                                Newcastle Brain Tissue Resource
                                Newcastle University
                                Only registered and activated users can see links., Click Here To Register...
                                nbtr@ncl.ac.uk

                                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                                Comment

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