Announcement

Collapse
No announcement yet.

So! What's next ?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    So! What's next ?

    I finished my first round of Lemtrada, at the end of January 2017, and I'm feeling pretty good ! I haven't regained any of my mobility, and I didn't expect to regain any . I am wondering if there are any plans, or strategies, to help MSers like me to recoup any of my lost functions . Any thoughts ?

    #2
    Jerry - I'm so glad to hear that you're feeling good! Here's something from the NMSS about repairing lost functions - http://www.nationalmssociety.org/Res...amaged-Tissues

    Also this - http://www.medicalnewstoday.com/articles/316382.php

    As one with SPMS and getting old, I'm not crossing my fingers yet. But hope something happens in my life time.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Hi Jerry,
      Glad your feeling better.

      If your sense of wellbeing has improved , do you think your up to an increase in physical activity?
      Probably start with physio t then if stamina and strength improves slowly increase exercise and get a regime suited to you going. You may be surprised how much activity you can do with decreased pain and discomfort and it helps to build muscle tone.
      Good luck and all the best and keep us updated
      Caroline

      Comment


        #4
        So, apparently, I am the sole MSer on this site who has had any recent experience, or took the time to post about it, with Lemtrada ! I much appreciate the 2 responses my post did receive. Thanks, you all. Good luck

        Comment


          #5
          Jerry,

          I've had the Lemtrada second year treatment and my hope is to level out or slow-down my disability progression.
          Hard to tell with all the good-days / bad-days. Really aren't any good-days only ok-days!

          re: "any plans, or strategies, to help MSers like me to recoup any of my lost functions"
          ...I'm not aware of anything.

          Comment


            #6
            Thank you, pb909! I appreciate your response. Sometimes I feel like posting on this board is a bit like shouting from Mt. Everest ! Or doing something in the ocean ! lol.

            Comment


              #7
              Originally posted by JerryD View Post
              Thank you, pb909! I appreciate your response. Sometimes I feel like posting on this board is a bit like shouting from Mt. Everest ! Or doing something in the ocean ! lol.
              My wife had her 2nd infusion back in March. Her December MRI showed that she is stable. Next week we are going to Stemgenex in San Diego. We're really hoping she gets some benefit from it. I'll post about that experience, but it may need to be in another thread.

              Comment


                #8
                Ive been checking your thread to see how its going for you. Waiting for a Jerry update.

                Comment


                  #9
                  Sorry for the late response, Temagami ! I am feeling well but I continue to hope for something that will help me to regain my former physical agility ! I know that is expecting a lot ! But we put a man on the moon !
                  Thanks for your interest in my story. Good luck

                  Comment


                    #10
                    Same here...

                    Hey Jerry!

                    Glad to to hear you're doing well. I also keep hoping that my mobility in my left leg will improve but so far it's the same/getting worse. But like you said, it may be asking a lot, probably more so in our first year. I believe you got your first round the week before me, if I'm remembering correctly??

                    So maybe I'll hold out some hope for a year after round 2....patience isn't my strong suit. I'm hoping we all get a positive boost from this ordeal. Take care!

                    Starla
                    DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

                    Comment


                      #11
                      Hi Starla,
                      I believe that you and I had the infusions around the same weeks, this year. And I hope all is going well for you. I don't expect to regain any of my lost functionality ! I hope for no further progression of this MonSter! Good luck

                      Comment

                      Working...
                      X