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  • Timothy,

    I agree with John. I hate reports about mice studies because these studies are very early in the research process. I think they mislead people and I’m not surprised that your doctors don’t want to go down this road with you. Researcher have a saying: “Mice lie and monkeys exaggerate.”

    This website reports on a lot of these mouse…[Read more]

  • Ed Tobias posted a new activity comment 4 days ago

    Hi Timothy,

    Thanks for joining our forums. I see you’ve already jumped in and made a comment on one of our topic discussions. That’s great. Please holler if John or I can be of any help.

    Ed

    • Ed Tobias posted a new activity comment 4 days ago

      Hi Mary,

      Thanks for joining our forums. (Is that Woodbury, LI in your profile? My wife grew up in Port Washington.)

      I hope you’ll add your comments and questions to some of our topic discussions and you’ll find some useful info here.

      Ed

      • Ed Tobias posted a new activity comment 4 days ago

        Hi Kathryn,

        Let me join John in welcoming you. I hope you’ll find information here that will help you and your son. Please share your comments and questions in some of our topic discussions. There’s one devoted to caregiving, though you’re welcome to jump in on any of them.

        Ed

        • Ed Tobias posted a new activity comment 4 days ago

          Hi James,

          Thanks for joining our forums. I know (or knew) White Plains. Back in the early 1970s I worked at WFAS Radio on Secor Rd in Hartsdale. I think the facility no longer exists, but I spent a great five years there.

          I wish you well with Ocrevus. Many people say they’ve done very well on it. I’ve done well on Lemtrada and my first…

          [Read more]

        • Abuse by an unpaid (family or friend) caregiver is the subject of my MS Wire column this week. Unfortunately, it’s not unusual. What’s your experience been?

          The Disturbing Trend of Caregiver Abuse in the MS Community

        • Ed Tobias posted a new activity comment 1 week ago

          Brittany,

          Nurses are angels. It’s always been that way but now, more than ever. I wish you all the best.

          Ed

            • It warms my heart to hear that 🙂 Wishing you the same.
                • Absotutey – I tried when I first stated out if I had the vocation to work with mentally challenged people. I did not. Still, gave it six months to find out. Instead ended up working with stand up comics. Patience – was quite handy, though satire worked best!
              • Ed Tobias posted a new activity comment 1 week, 1 day ago

                Hi Brittany,I’m glad you found this website and have joined us in the MS forums. I’m at the other end of the age/MS spectrum from you. I’m 72 years old and was diagnosed way back in 1980. I worked, full-time, until retiring at the end of 2012 and traveled all over the world. (Travel to be resumed after COVID.) I’ve written about a lot of my…

                [Read more]

                • Hi Ed! Thank you for welcoming me to this forum/community. I can’t say it’s a blessing to have MS, but it is most definitely a blessing to have a community of people who can relate and support one another. I hope to have such a productive life as yours on my MS journey! I’m am only on year 4 of my nursing career. Blessings to you!
                    • Brittany,

                      Nurses are angels. It’s always been that way but now, more than ever. I wish you all the best.

                      Ed

                        • It warms my heart to hear that 🙂 Wishing you the same.
                            • Absotutey – I tried when I first stated out if I had the vocation to work with mentally challenged people. I did not. Still, gave it six months to find out. Instead ended up working with stand up comics. Patience – was quite handy, though satire worked best!
                      • Ed Tobias posted a new activity comment 1 week, 1 day ago

                        Thanks for joining us, Martina. I hope you’ll add your comments and questions to our topic discussions. I wouldn’t be surprised if you find some other bikers here. I wrote one of my columns about biking with MS, a few years ago, and was surprised how many MS bikers are on the road. Ed…

                        [Read more]

                      • Ed Tobias posted a new activity comment 1 week, 1 day ago

                        Hi Clay,

                        Let me join John in welcoming you. There are a lot of people here who have lived with MS for a long time but, also, many who are new to MS…like you. Please share your questions, comments and concerns in some of our topic forums and we’ll try to help guide you through the MS maze.

                        Ed

                        • Ed Tobias posted an update 1 week, 1 day ago

                          Rare Disease Day is February 28th. Are you involved in it? Do you think MS is a “rare” disease? I may be in the minority, but I don’t.

                          MS Is a Rare Disease? I Think Not

                        • Ed Tobias posted a new activity comment 1 week, 3 days ago

                          Hi Jenna,

                          Thanks for joining us and sharing your story. I’m sorry you’ve had a difficult to follow but I’m glad that you’re been treated with a heavy-hitting treatment. As someone who’s lived with MS since 1980, before any DMTs were available, I’m a firm believer in the hit it hard, hit it early approach.

                          I hope you’ll share your comments…

                          [Read more]

                        • This is one of the best explanations I’ve read about how MS attacks each of us differently.

                          Ed

                        • Ed Tobias posted a new activity comment 1 week, 3 days ago

                          Lola,

                          I had brain MRIs ever six month to look for a shadow that, apparently, is an early sign of PML infection. I also had regular blood tests (I think they were also twice a year) to monitor my JVC titer. The higher the titer the more concern there is about developing PML. When it rose to a certain level I changed meds from Tysabri to…

                          [Read more]

                        • Ed Tobias posted a new activity comment 1 week, 3 days ago

                          Hi Janet,

                          I used the generic of Provigil for years. At first it seemed to help but, over the years it’s lost its efficacy. I think exercise helps significantly. There was a study about fatigue meds a couple of months ago. Here’s something I wrote about…

                          [Read more]

                        • Ed Tobias posted a new activity comment 1 week, 4 days ago

                          Hi Lola,

                          Let me add my welcome to John’s.

                          I’ve been living with MS since 1980 and have been treated with Avonex, Tysabri, Aubagio and finally Lemtrada.

                          Like you, I’m JCV+ and most people are! Even so, I used Tysabri, the DMT with the most concern for PML, for about seven years without any PML problem. With careful monitoring PML can…

                          [Read more]

                        • Ed Tobias posted a new activity comment 1 week, 4 days ago

                          Hi Jenny,

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

                          Ed

                          • Ed Tobias posted a new activity comment 1 week, 6 days ago

                            Hi Genevive,

                            Welcome to the forums. Wow, that’s some list. I share a couple. JCV (most people are JCV+) and high cholesterol (controlled by meds for many years).

                            I hope you’ll find useful info here and will share comments and questions in some of our topic discussion sections.

                            Ed

                            • Ed Tobias posted a new activity comment 1 week, 6 days ago

                              Hi Susan,

                              Thanks for joining us. I’m sorry for all of the difficulty you’ve had and it’s interesting you think that you MS may have started in childhood. Pediatric MS has only gained attention in the past several years. One has to wonder how someone’s disease progression might have changed had the illness been caught, and treated, earlier…

                              [Read more]

                              • Not knowing anything about MS it wouldn’t have mattered!
                                I was a preemie also. Grew up in RI.
                                Once they realized there is pediatric MS I just remembered things that sound like MS.
                                I’ll look at the forums.
                              • Ed Tobias posted a new activity comment 1 week, 6 days ago

                                Hi Kattie,

                                Let me join John in welcoming you. I hope the info here will be of some help with your TN. Feel free to join some of our topic discussions, if you like.

                                Ed

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