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    Recently diagnosed

    I was recently diagnosed 4 days ago. My MS specialist said on average, it takes 4 years to get a definitive diagnosis. My first MS sign was January of this year, so my diagnosis took 9 months, not sure if this is a blessing or a curse.

    My doctor was originally going to start me on Copaxone, however my MRI Wednesday showed so much new activity, especially on my c-spine, he decided to start me on Betaseron instead. He is concerned because it appears to be progressing rapidly.

    Because I am in the midst of a flare I will be doing IV steroids this week and should also be getting my Betaseron supplies and training. This has moved so quickly it's a little overwhelming and very scary!

    i looked on the Betaseron board but didn't see much current info, anyone have any tips for what to expect?

    #2
    Hey There, I just wanted you to welcome you here even though it is under less than desirable circumstances. I don't know much about medications yet because I recently was given a recommendation for Extavia from my doctor. I think that's a Betaseron. I try to read some here and there. There is a lot of information on the internet. Have you tried going to the NMSS website to read about the treatment options?

    I hope someone else comes along soon to respond. There are some pretty knowledgeable people on here. I'm just not one of them lol

    Comment


      #3
      Hi Becs81 recently DX well its not the end of the road you just have to look at life a little different, research and talking to other "like" people really does help to understand what is happening.

      MS seems to effect us all in different ways and the way it progresses can also be very different.

      There is a DX criteria set out with scans, lumber puncture and neurologist reports all adding to the DX I don't think it is a time period, I was DX 23 years ago and back then you had to have experienced more then "two episodes of MS" even if you had lesions on your brain and chord and an neurological episode (this probably isn't making any sense, not even sure it is to me its 5am here in OZ)

      Anyway what Im trying to say is life can still be really great, lean on your family and friends and this forum is a great read good luck and if your going to have MS now is the time to have it with all the new research going on Craig

      Comment


        #4
        Originally posted by jamilea View Post
        Hey There, I just wanted you to welcome you here even though it is under less than desirable circumstances. I don't know much about medications yet because I recently was given a recommendation for Extavia from my doctor. I think that's a Betaseron. I try to read some here and there. There is a lot of information on the internet. Have you tried going to the NMSS website to read about the treatment options?

        I hope someone else comes along soon to respond. There are some pretty knowledgeable people on here. I'm just not one of them lol

        Thank you you for your response! I have been reading on the info on NMSS, great suggestion! Hoping for the best for you on this journey we are now on together!

        Comment


          #5
          Originally posted by dastardly View Post
          Hi Becs81 recently DX well its not the end of the road you just have to look at life a little different, research and talking to other "like" people really does help to understand what is happening.

          MS seems to effect us all in different ways and the way it progresses can also be very different.

          There is a DX criteria set out with scans, lumber puncture and neurologist reports all adding to the DX I don't think it is a time period, I was DX 23 years ago and back then you had to have experienced more then "two episodes of MS" even if you had lesions on your brain and chord and an neurological episode (this probably isn't making any sense, not even sure it is to me its 5am here in OZ)

          Anyway what Im trying to say is life can still be really great, lean on your family and friends and this forum is a great read good luck and if your going to have MS now is the time to have it with all the new research going on Craig

          Thank you you so much for your encouragement and positivity!!

          I have to admit that although I am happy to have answers and to know I'm not crazy.... I did not want MS. I had a little pity party.... And there may be future pity parties. However, now I'm ready to put my big girl panties on and do what needs to be done to keep living my life to its fullest... Even if that looks a little different than before!

          Comment


            #6
            Sorry for your diagnosis, but you are doing the right thing. You have every right to throw a pity party, but smart to recognize it and know there will be more. My first year following diagnosis was the toughest mentally. And I have had a few parties since then too!

            A lot of studies show the earlier in the disease you start on a DMT, the better. So cutting the diagnosis time may help you that way.

            Since your neurologist and you are concerned about the new activity, you may want to get a second opinion on the treatment recommendation. You can always start on Beta, and then change if something stronger is recommended. Both copaxone and Beta are part of the 1st generation DMTs and serve some people really well. There are more now that have higher efficacy, but also higher risk on side effects.

            It becomes a very personal decision based on our own life, the people in it, our health (MS/non-MS), age, and risk tolerance.

            I would find out if your neurologist is part of the Touch protocol and can prescribe Tysabri. Possibly a JCV titer blood test to see if possible option for you. That way, you know if a possibility for you if you want to consider it if not now, but at some point.

            Can't help with Beta, was on Avonex and Rebif (both also 1st generation DMT), now Tysabri.

            I am sure it seems hard to imagine now, but life does goes on. Look forward to more posts...welcome!
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              Originally posted by pennstater View Post
              Sorry for your diagnosis, but you are doing the right thing. You have every right to throw a pity party, but smart to recognize it and know there will be more. My first year following diagnosis was the toughest mentally. And I have had a few parties since then too!

              A lot of studies show the earlier in the disease you start on a DMT, the better. So cutting the diagnosis time may help you that way.

              Since your neurologist and you are concerned about the new activity, you may want to get a second opinion on the treatment recommendation. You can always start on Beta, and then change if something stronger is recommended. Both copaxone and Beta are part of the 1st generation DMTs and serve some people really well. There are more now that have higher efficacy, but also higher risk on side effects.

              It becomes a very personal decision based on our own life, the people in it, our health (MS/non-MS), age, and risk tolerance.

              I would find out if your neurologist is part of the Touch protocol and can prescribe Tysabri. Possibly a JCV titer blood test to see if possible option for you. That way, you know if a possibility for you if you want to consider it if not now, but at some point.

              Can't help with Beta, was on Avonex and Rebif (both also 1st generation DMT), now Tysabri.

              I am sure it seems hard to imagine now, but life does goes on. Look forward to more posts...welcome!

              Thank you for your input and encouragement Kathy. My MS specialist is part of the Touch protocol. We discussed different medicines, side effects, etc. I think one of the things he really likes about the Betaseron is that it is a first generation, that the side effects are pretty known. He thinks it is a good drug to start out on, with the option of changing in the future. He also discussed a drug trial he thought would be beneficial if that is something I am interested in later on.

              There is so much information about everything!! However, just starting out I think I am comfortable right now starting on Betaseron because the side effects don't seem as severe. I am 35 and have two small children and am trying to find the perfect balance in all of this... but aren't we all?

              Right now I love my Dr. and have full confidence and a great relationship with him. I feel completely comfortable discussing all options etc with him, however, if that changes the option of getting a second opinion is a great one to have.

              How do you like the Tysarbi? I think I am as fearful of the side effects from these DMT's as I am of the disease itself, however the research of slower progression and fewer lesions/ relapses seem worth it to me at this time!

              Comment


                #8
                I like Tysabri a lot. No real side effects and it halted my progression.

                My first neuro was more conservative as well and stuck to 1st generation DMTs unless progressing. At the time, Tysabri had been pulled and coming back on the market. Once the risk for PML was tied to being JCV+ and then subsequently, to how high the titer value was and number of Tysabri infusions, he had no qualms recommending it for me. I was JCV- and fortunate to still be.

                That neuro has since retired. We did have a discussion that he wonders if he had recommended Tysabri earlier, would I have progressed. But it is a question we both knew couldn't be answered.

                The one area he was a little different from your neuro is that he wouldnt recommend participating in a trial if stable, because you could wind up in placebo group, so no med, and progression could then occur. But if progressing and all other meds failed, he would consider it, but was concerned about unknown side effects. He was risk averse.

                Hope Beta works for you and you have no side effect. I am sure trying to keep up with the kids, MS or No MS is a challenge!
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  I was JCV- and fortunate to still be.


                  What is JVC?

                  Comment


                    #10
                    Originally posted by Bever View Post
                    I was JCV- and fortunate to still be.


                    What is JVC?
                    Bever

                    JCV is the John Cunningham Virus, which can cause a serious brain infection called PML.

                    Certain MS disease modifying drugs increase the risk of PML due to the immune system becoming compromised, and not being able to fight off the JC Virus.

                    This info about JCV and PML helps to explain it:

                    https://multiplesclerosis.net/living...-pml-jc-virus/

                    Hope this helps!

                    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


                      #11
                      Bever,
                      'JVC'... ha, ha, ha, ha! That's the name of a Japanese electronics manufacturer! I think you're just funnin' us ! Do you really have MS? If so, I suggest that you spend a lot of your mental energy studying about MS and all of the issues surrounding it! Good luck

                      Comment


                        #12
                        Originally posted by KoKo View Post
                        Bever

                        JCV is the John Cunningham Virus, which can cause a serious brain infection called PML.

                        Certain MS disease modifying drugs increase the risk of PML due to the immune system becoming compromised, and not being able to fight off the JC Virus.

                        This info about JCV and PML helps to explain it:

                        https://multiplesclerosis.net/living...-pml-jc-virus/

                        Hope this helps!

                        Take Care
                        Thank you Koko, definitely something to be aware of.

                        Comment


                          #13
                          Originally posted by JerryD View Post
                          Bever,
                          'JVC'... ha, ha, ha, ha! That's the name of a Japanese electronics manufacturer! I think you're just funnin' us ! Do you really have MS? If so, I suggest that you spend a lot of your mental energy studying about MS and all of the issues surrounding it! Good luck
                          Thanks for the laugh JerryD, we all need to laugh sometimes

                          Comment

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