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    New Maybe

    Hello, Well it looks like I will be joining the Tysabri users soon. That makes us sound like drug addicts My index came back positive at .8 but my neurologist and the M.S. specialist feel that I should still do it because I am going downhill to fast.
    I already have a large lesion load and lot of atrophy. Must admit it scares the fertilizer out of me but none of the other drugs have worked or I could not tolerate them.
    The insurance has approved it but am still waiting on the help for the copay, it sounded pretty good though, should know real soon they said.
    I have had a continual t.n. headache for over a year and spasms everywhere,bowel and urinary problems and the list goes on, have not been able to tolerate most of drugs that work. I know the Tysabri will not fix this but hopefully I will stop getting new lesions constantly.
    PEACE

    Tortis

    #2
    Hey tortis,
    I believe in positive thinking. I hope Tysabri will halt your progression, help with many of your sx(symptoms) and that your MRI's are so much better.

    Good luck
    Linda
    Linda

    Comment


      #3
      Tortis,

      Everything will come together I just know it!!!! Positive thinking and knowing this could be your lead to a more quality type of life. Youv'e been in my thoughts and prayers and please keep me in yours. The depression is getting the best of me at this point. But I've struggled with that and I just know I'll get better once the cloud is lifted. Take good care of yourself and I mean it and I'll do the same.

      Diamond


      Diagnosed 6-28-14
      RRMS
      Alone we can do so little; together we can do so much. ~Helen Keller~

      Comment


        #4
        Hi, Linda and Diamond57, Thanks for the nice responses. This little thought is one way I work through my depression. I have it on my sunset picture in the Gallery in the creative center on this site take a look.

        No matter how bad it gets, we need to still see, feel, hear and even imagine all the beauty around us!

        PEACE

        Tortis

        Comment


          #5
          Hey Tortis and Diamond,
          when I was first dx, 1988, I bought a book.. "You Can't Afford the Luxury of a Negative Thought"-it was my bible for a very long time.

          Good luck and my best wishes
          Linda
          ps I've been on Tysabri since 9/2006. I thank G-d for it
          Linda

          Comment


            #6
            UPDATE!

            Well it looks like it is finally going to happen. I am scheduled for my infusion at 10 am Wednesday 29 morning.
            Must admit I am scared but I have gone as long as I can, just steroids since quitting the Avonex in 2000, but now the progression has just become to much. All of you really have helped me just reading your experiences with Ty. I can only hope and pray that all goes well.
            PEACE

            Tortis

            Comment


              #7
              Tortis:

              It is great that you are starting Ty. It has stopped my progression as far as lesions go. I have a JCV index of 3.5 though and may be getting off of it. I hope it works as well for you as it has for me!

              Good luck!

              Lisa
              Disabled RN with MS for 14 years
              SPMS EDSS 7.5 Wheelchair (but a racing one)
              Tysabri

              Comment


                #8
                brain fog again

                Originally posted by tortis View Post
                Well it looks like it is finally going to happen. I am scheduled for my infusion at 10 am Wednesday 29 morning.
                Must admit I am scared but I have gone as long as I can, just steroids since quitting the Avonex in 2000, but now the progression has just become to much. All of you really have helped me just reading your experiences with Ty. I can only hope and pray that all goes well.
                PEACE

                Tortis
                It should have said 10 am Wednesday the 22nd. Do not seem to be able to do anything right lately.
                Tortis

                Comment


                  #9
                  Let's hope you make it on Wed 22nd instead of thinking the 29th

                  I've never been on Ty, but wish you only the best, tortis, and hope it helps stop the progression
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #10
                    Hey tortis,
                    your infusion is only a few days away
                    I would suggest you hydrate. The powers that be might tell you not to drink coffee. I learned that a cup of coffee helps my veins pop/puff up
                    You will be there for probably at least 2 hours. I bring something to read. Bring anything that you like to occupy yourself with. Depending on the center you might have a t v. ??
                    If you think you might get hungry bring something to eat.
                    Many have needed Benadryl-don't worry if you do!

                    I hope you do at least as well as I have
                    Linda

                    Comment


                      #11
                      Thanks

                      Just wanted to thank you's for your reply's. I am trying to stay positive and really try not to think about it to much but that is easier said than done. Once again thanks, I will try to let you's know how it went.

                      PEACE
                      Tortis

                      Comment


                        #12
                        starting this Thursday

                        The Tysabri infusions. I am positive JCV 1.51 but I am hopeful as is my doc that this might do the trick. And so it begins....will keep you all posted. Thank you for all the info on this board.

                        Comment


                          #13
                          Hi!

                          Hi Tortis!

                          I'll be praying for you and thinking of you. I've been in the hospital in Mqt. a couple weeks ago for 10 days. I hope you do fine. Lots of support on here for you with mine included.

                          My best to you...........
                          Diamond


                          Diagnosed 6-28-14
                          RRMS
                          Alone we can do so little; together we can do so much. ~Helen Keller~

                          Comment


                            #14
                            Not sure if you still have the tension headaches. My Neuro prescribed butal50 acet325 caff40MG. THIS IS 1 pill. I take it at the onset of the headache and it works like a charm. The key is ONSET. Good luck with all issues.

                            Comment


                              #15
                              Originally posted by frosty123 View Post
                              The Tysabri infusions. I am positive JCV 1.51 but I am hopeful as is my doc that this might do the trick. And so it begins....will keep you all posted. Thank you for all the info on this board.
                              Hey frosty123,
                              you might want to note my suggestions to shel67 re hydrating etc..
                              I hope you have a great experience with your 1st infusion and Tysabri in general
                              Yes, please keep us posted !
                              Linda

                              Comment

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