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  • Amanda Sorrow became a registered member 1 week, 1 day ago

    • Hi Amanda,
      Welcome – loads of info, research & experiences on here.
      You can also start topics – my fellow
      moderator Ed Tobias explains ‘Posting Items’ at the top of each Forum.
      Cheers John
      PS I suffer from TN too. Wrote about it when it first hit me regularly in July 2017 https:/…

      [Read more]

    • Hi Amanda,

      I’m sorry you’ve been though so much but glad that you’ve joined us here in the forums. I hope you’ll join in on some of our topic discussions and that the info will be of some help.

      Ed

    • Hurrah.

      I’ve been beating the UTI drum with my doctors for years! You could say I’ve been bladdering on about it!! OK you shouldn’t and I most definitely shouldn’t……

      Glad some researchers are delving into it as reported by our news section today.

      Do you suffer from UTI problems at all?

    • I was just reading the new, supposedly improved guidelines, Canada has imposed on PPMS patients. In particular it seems with their ongoing reluctance to administer Ocrevus, now to people over the age of 55. Roche originally were going to not recommend Ocrevus for the over 55 patients, but changed their mind. I am currently 67 and have been on…[Read more]

      • I’m in the UK and was on Ocrevus but pulled from it in December because it was decimating my immune system https://multiplesclerosisnewstoday.com/columns/2019/12/11/stop-in-the-name-of-leukocytes/. Obviously before Covid! Surely if it increases the risk of contracting COVID-19 this needs to be balanced against how helpful it is to you. The…

        [Read more]

      • I found out the hard way about Ocrevus and immune system. A couple of years ago I contracted an infection that landed me in the hospital for 2 days hooked to IV of anti-biotics. It killed the infection and they never identified what is was. Since then I self imposed indoors for two weeks after infusion and have not had a problem since. I…

        [Read more]

      • Hi Steve,

        Thanks for your comments. I’m concerned about guidelines that place an age ceiling on a treatment. I’ve been treated with Lemtrada. It’s helped slow progression and improve some symptoms, a bit. I began those treatments in Dec., 2016 when I was 69!

        BTW, the Lemtrada protocol requires that, before and after each series of…

        [Read more]

      • I was reading about how proud Canada is in treating immigrants with MS. And with the health care system they are treated for free. How is it then that citizens of Canada, over the age of 55, and have PPMS are denied Ocrevus ? This drug very well over the long run could save Canada money. If…

        [Read more]

    • Carol Jean DeGroot became a registered member 1 week, 2 days ago

      • Hi Carol,

        Thanks for joining us here in the forums. We hope you’ll join in some of the topic discussions and there’s info about how to do that stuck to the top of each forum page.

        Please reach out to me, or co-moderator John Connor, if we can help at all.

        Ed

      • For some of us who’re in a self imposed house arrest may I offer these BOX hits – ones that have attracted at least my wife to join in!

        Justified Based on an Elmore Leonard short story ‘Fire in the Hole’. A modern day detective/western procedural that maintains its grip till its final theatrical scene at the end of series 6. It is also the best…[Read more]

      • Rachael became a registered member 1 week, 3 days ago

        • Hi Rachel,

          Let me join John in welcoming you. We’re glad that you joined us and hope you’ll jump in and add your thoughts and questions to some of our topic discussions.

          Ed

        • Rachael's profile was updated 1 week, 3 days ago

          • Hi Rachel,
            Welcome – loads of info, research & experiences on here.
            You can also start topics – my fellow
            moderator Ed Tobias explains ‘Posting Items’ at the top of each Forum.
            Cheers John

          • Kirsty became a registered member 1 week, 3 days ago

            • Hi Kirsty,
              Welcome – loads of info, research & experiences on here.
              You can also start topics – my fellow
              moderator Ed Tobias explains ‘Posting Items’ at the top of each Forum.
              As you’re new to MS sure you’ll first look at the ‘Newly Diagnosed Forum’ . As one of the ‘Patient Columnists’ I wrote one sparked by one of the entries ‘An Open Le…

              [Read more]

            • Hi Kirsty,We’re glad that you’ve joined us here in the forums. As an MS “newbie” I’m sure you have lots of questions and concerns so don’t be shy about posting. If you have questions about navigating the site John or I will be glad to help out.

              Ed

          • David Kallman became a registered member 1 week, 3 days ago

            • Hi David,
              Welcome – loads of info, research & experiences on here.
              You can also start topics – my fellow
              moderator Ed Tobias explains ‘Posting Items’ at the top of each Forum.
              Cheers John
                • How do I get a list of Forums?
                  When is next Forum and how do I access it?
                  How do I get the info, research and experiences?
                    • Hi David,

                      Welcome. I’m not sure on what page you landed when you joined us so I’m going to walk you through this from the msnewstoday.com website’s home page.
                      *On that page click on the three gray bars at the upper right corner. This will take you to a website menu.
                      *On that menu click “Forums.”
                      *This will take you to a list of several…

                      [Read more]

              • Angela Darroch became a registered member 1 week, 3 days ago

                • Hi Angela,
                  Welcome – loads of info, research & experiences on here.
                  You can also start topics – my fellow
                  moderator Ed Tobias explains ‘Posting Items’ at the top of each Forum.
                  Cheers John
                • Of course this weeks column has been headlined by me with the far more flowery ‘The Joy of Joining the ‘Downton Abbey’ Set‘.

                  In my very roundabout-way – many exits, and I try to try them all! – I describe how carers have changed me and my families life.

                  It only took a major relapse for me to accept it……

                • Judy R became a registered member 1 week, 5 days ago

                  • Hi Judy,
                    Welcome – loads of info, research & experiences on here.
                    You can also start topics – my fellow
                    moderator Ed Tobias explains ‘Posting Items’ at the top of each Forum.
                    Cheers John

                  • Thanks for the info, Christine. The issue of drug manufacturers helping to pay for their medications is a complex one and it shouldn’t be! I had to discontinue using Ampyra several years ago when I went on Medicare and I could no longer receive copay assistance. My monthly cost soared from $40 to $500.

                     

                    Ed

                  • Ta.

                    Well, the murk is clearing and am beginning to see the outlines of the bottom of the sea of science I’m trying to swim in!

                  • A good Monday morning, everyone. Do you have a shaggy dog story to share. (Cat stories welcomed, too). Here’s mine. https://multiplesclerosisnewstoday.com/columns/2020/07/20/pets-dogs-joey/

                  • Jacqueline Murphy became a registered member 1 week, 6 days ago

                    • Hi Jacqueline,

                      I’m glad you joined us here in the MS forums and I hope you’ll join in some of our topic discussions. We’re about the same age, BTW, and I grew up in Manhattan.

                      As you’ve discovered, MS is tough to diagnose. I was DXed when my son was only a year old so he and my MS sort of grew up together. It’s the only way my grandkids…

                      [Read more]

                  • AO4141 became a registered member 1 week, 6 days ago

                    • Hi,

                      I’m guessing AO4141 isn’t your real name, so I can’t use it to give my usual “Hi xxx,” but welcome to our forums. It’s great to have an NP here and I hope you’ll join in some of our topic discussions and share your experience as a healthcare professional.

                      Please let me, or co-moderator John Connor, know if you need help navigating the…

                      [Read more]

                  • Dalfampridine is the generic for ampyra.  Mylan sells it for a lower cost.  On goodrx it is $$91 ampyra is over $300.  According to the news articles, optumrx does claw back and is causing me not to be able to purchase the generic from even outside companies.  There is a bipartisan bill passed in 2019 that outlaws this practice.  But optimrx and…[Read more]

                  • This is quite technical but very interesting as it shows that in a mouse  model, they were actually able to block this oxidative stress  that these genes seem to cause and reverse all symptoms of MS. Let’s hope that this goes to human trials soon.

                  • Nana became a registered member 2 weeks, 1 day ago

                    • Hi Nana,
                      Welcome – loads of info, research & experiences on here.
                      You can also start topics – my fellow
                      moderator Ed Tobias explains ‘Posting Items’ at the top of each Forum.
                      Cheers John
                      • Thanks for joining us, Nana. It looks like you’ve had a good, symptom-free ride but now it seems as if it’s time for you and your neuro to work together to find a roadblock to put in front of your MS.Good luck on your appointment. Please let us know what the two of you decide.

                        Ed

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