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    Diagnosed today

    Hello

    I was officially diagnosed today. It is going to take me a while to absorb it all.

    My neuro is going to start me on copaxone as soon as insurance approves it.

    I would love to hear any words of wisdom; tips etc.. and any info on the medication.

    #2
    Hi Txgirl150

    Originally posted by Txgirl150 View Post
    I was officially diagnosed today. It is going to take me a while to absorb it all.
    Yes, it does take time to process, and you may feel overwhelmed. Try to take each day as it comes, one day at a time.

    Also, it is very helpful to learn some ways to reduce anxiety, especially with breathing techniques which can produce relaxation in a short time.

    Please continue to ask questions and let us know what you are experiencing, Txgirl.

    We'll be glad to help, if we can.

    Also, the National MS Society website contains much information and resources (when you feel ready for more absorbing.)

    https://www.nationalmssociety.org/Sy...ewly-Diagnosed

    Hopefully, members with Copaxone experience will respond and share what they know.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by Txgirl150 View Post
      Hello

      I was officially diagnosed today. It is going to take me a while to absorb it all.

      My neuro is going to start me on copaxone as soon as insurance approves it.

      I would love to hear any words of wisdom; tips etc.. and any info on the medication.
      I'll just reaffirm what Koko mentioned. Keep it going.... one day at a time.

      And the breathing exercises for anxiety, they definitely work.
      The future depends on what you do today.- Gandhi

      Comment


        #4
        Welcome to MSWorld, txgirl.

        I was on Copaxone for 12 years, following 5 years of Betaseron. For me, Copaxone was much more effective. On Betaseron, my MS was fairly out of control. Copaxone truly did help my MS flares to be less frequent and much less severe.

        I just discontinued last week, due to progressing to SPMS; I no longer have MS flares and an MRI confirmed no new recent lesions.

        Other than some site injection issues, I didn't experience any side effects. Shared Solutions paid my share so there were no copayments for me; Copaxone was free.

        You might like to browse this sub-forum to learn more about others' experiences with Copaxone. Feel free to ask questions.
        https://www.msworld.org/forum/forumd...p?104-Copaxone
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Originally posted by Txgirl150 View Post
          Hello

          I was officially diagnosed today. It is going to take me a while to absorb it all.

          My neuro is going to start me on copaxone as soon as insurance approves it.

          I would love to hear any words of wisdom; tips etc.. and any info on the medication.
          A new diagnosis is a lot to take in and can be an emotional roller coastal ride. Be kind to yourself and also be patient with yourself.

          It is important to educate yourself about MS, but you don't need to do it all at once and overwhelm yourself. The Newly Diagnosed link is a great place to start when you are up for it.

          I was never on Copaxone, so I really can't comment on the medication.

          Please feel free to ask any questions you want. We all remember what a new diagnosis feels like.

          Take Care.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Hi Txgirl!

            Sorry to hear about your diagnosis but I'm glad you found us.
            Being newly diagnosed can definitely be an emotional time!

            I have been taking copaxone for a long time and I haven't had any side effects or relapses since I've been taking it. It is pretty easy to use. Just 3 shots a week.

            If you have any questions just ask. There's a lot of people here that have been in your shoes and we'd love to help!

            Best wishes! Ei

            Comment


              #7
              Thank you all for your words of encouragement. I donít think it has all really all set in.

              I am worried about the needles. I am a fainter..lol. I have mastered blood tests and shots. I just donít look. Iím hoping with the auto injector thing that hides the needle, then I wonít have a problem.

              Comment


                #8
                Sorry to hear the news.

                When i was diagnosed in 2018 it took me a while to claim MS. I felt like i was too much of a newbie to talk about it, complain or even support the MS cause. I think it just took me a while to settle in to it and accept it.

                I will say i used to think about it every minute of everyday and now, 2 years later, i don't even remember i have it. It takes someone bringing it up for me to say "oh yea, i have that".

                I started on Tysabri. I didn't do well on it. They couldn't find veins, i was always dehydrated and just wiped out. I switched to Mayzent which has been ok. Now i may be looking at another option only because my liver enzymes have been increasing every month which could be the Mayzent. You have to find what works for you. No two people will have the same experience so you can't just judge from another. And it's ok if the first thing doesn't work, something hopefully will.

                Hang in there. I'm still learning about the disease itself and my own limits. Don't be afraid to set those limits with those around you. They need to know how you are doing

                Take care and good luck!! We are fortunate to be diagnosed now then those prior to us (so i've been told).
                Dx March 2018; possible first episode: August 2011
                Tysabri May 2018-June 2019, Mayzent July 2019

                Comment


                  #9
                  Originally posted by Txgirl150 View Post

                  I am worried about the needles. I am a fainter..lol. I have mastered blood tests and shots. I just donít look. Iím hoping with the auto injector thing that hides the needle, then I wonít have a problem.
                  I consider myself to be a "needle weenie". To this day, at the age of 58, I am also unable to look when I get injections or when a lab draws blood for tests. I get light-headed and worry that I'm bar risk of fainting. Even after 17 years of giving my own injections.

                  It really does help to not see the needle. It has its cap on when you put it in the autoinjector.

                  Instead of worrying about the needle, start working on preparing yourself to push the button. Don't think about the syringe; expect a "mosquito bite".

                  A surprise I had in the beginning -- seeing the syringe without its cap *after* the injection is over when I take it out to discard it. This quickly became a non-issue but, at the beginning it was a minor problem.
                  ~ Faith
                  MSWorld Volunteer -- Moderator since JUN2012
                  (now a Mimibug)

                  Symptoms began in JAN02
                  - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                  - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                  .

                  - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                  - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                  Comment


                    #10
                    Originally posted by Txgirl150 View Post
                    Thank you all for your words of encouragement. I donít think it has all really all set in.

                    I am worried about the needles. I am a fainter..lol. I have mastered blood tests and shots. I just donít look. Iím hoping with the auto injector thing that hides the needle, then I wonít have a problem.
                    Hello Txgirl,

                    I am not a big fan of needles either but have been been on Copaxone and or Glatopa (generic) for over 10 years. For me the injector is the ticket and I have never injected without it. The best part is in 10 years, I've only had 1 or 2 very minor flares and have had very stable MRIs so it works! I tried Tecfidera, an oral treatment, for a little over a year but my white blood cell count started dropping so back on Copaxone and since it works, I'm not changing again. I wish you well on your MS journey and reach out anytime, there are plenty of folks on here willing to share their experiences and offer advice.

                    Comment


                      #11
                      I havenít had a real sit down yet with the dr, so I am a little unclear about what I am supposed to be doing. Obviously I am supposed to start the medicine. Shared solutions already contacted me and thankfully, I will not have to pay for anything.

                      I think a nurse normally comes to me to teach me how to do the injection but due to Covid, I donít think they are going to do that. They are telling the watch the video on their site, which I have done.

                      I donít want to do the first injection alone. It seems like a professional should be with me. Iím thinking my drs office is going to need to help with this. I pick up the medication on Tuesday. I am supposed to go to my MS drs on Wednesday to repeat one of my labs. Maybe they could help me then, if the injector has arrived.

                      Do I call and report any symptoms; new symptoms? What is the normal protocol?

                      Comment


                        #12
                        Hi Txgirl.

                        I understand you wanting someone to be with you and when you do your first shot. I think your idea to see if your ms doctors office will help is a good idea but you should probably call and ask first.
                        If not them maybe your regular dr's office?

                        Years ago when I took my first injection of betaseron it was so new there was nothing like shared solutions. My neuro's office had a demo kit that had the needle but just empty vials and alcohol pads. She told me how to do it but when I got the real stuff I was very nervous. I finally asked a nurse I knew to help me do the first shot.

                        As far as reporting side effects. You can call shared solutions to report any side effects or questions.

                        Good luck!

                        Comment


                          #13
                          Originally posted by Txgirl150 View Post

                          I think a nurse normally comes to me to teach me how to do the injection but due to Covid, I donít think they are going to do that. They are telling the watch the video on their site, which I have done.

                          I donít want to do the first injection alone. It seems like a professional should be with me. Iím thinking my drs office is going to need to help with this. I pick up the medication on Tuesday. I am supposed to go to my MS drs on Wednesday to repeat one of my labs. Maybe they could help me then, if the injector has arrived.

                          Do I call and report any symptoms; new symptoms? What is the normal protocol?
                          Ohhh, that's too bad that Shared Solutions can't send a nurse out to help you. I like your idea of having your doctor's office help you, if the timing works out. I hope they'll agree to do that.

                          If not, could Shared Solutions at least do a virtual visit or something, so that they could sort of be with you? I'm surprised they didn't suggest that; it seems like it's their job to train you regarding giving injections.

                          About symptoms, yeah -- you could call Shared Solutions or your neuro or both. I didn't have any side effects other than site reactions.
                          ~ Faith
                          MSWorld Volunteer -- Moderator since JUN2012
                          (now a Mimibug)

                          Symptoms began in JAN02
                          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                          .

                          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                          Comment

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