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    #16
    Originally posted by Jules A View Post

    While I definitely don't think we need to throw in the towel before its time MS does not have a great prognosis overall and frankly they can shove that CIS placeholder where the sun don't shine. Expecting physicians to hold our hands and pretend as if there isn't the likelihood of significant disability in our future is unrealistic.
    My understanding is that while we may need assistance with some things, significant disability isn't an expectation anymore. If you have seen different studies, please share.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #17
      Jules

      If I knew he was ok with my Switzerland plans it would probably be different. We have had talks about the subject and seem to disagree.

      Not so much on the idea of it - just when it should be used for. So that’s also another factor I need to consider.

      Temagami

      I’m trying to give him a better future because being 100% honest there’s only a few ways this ends in my mind
      1. Switzerland

      2. Its to late for Switzerland and I end up needing a caretaker

      3. I spend all this time and energy working out and eating the strictest diet ever and we end up breaking up because we can’t ever spend time together because I won’t miss the gym or take a day off my diet


      Once this week is over I’m going to bring up Switzerland and just see if that’s something he can accept.

      His best friend is staying here this week because him and his wife had a pretty bad fight..:. So now isn’t the ideal time

      Comment


        #18
        Originally posted by pennstater View Post
        My understanding is that while we may need assistance with some things, significant disability isn't an expectation anymore. If you have seen different studies, please share.
        Please add anything you might have found also because I'm all for good news.

        Although it can take many years, hopefully, it is my understanding that for those of us with RRMS the odds of eventually transitioning to SPMS are fairly high and that is a prognostic indicator.

        "By the end of the study, of 806 patients with an initial RR
        course, 534 (66.3%) had SP MS and 272 (33.7%) remained in
        the RR phase (table 1)."
        "Among patients with SP MS, 92% reached DSS 6, 68% reached DSS 8
        and 23% reached DSS 10; times to endpoints were 14, 24 and
        45 median years from disease onset and 3, 12 and 30 median
        years from onset of SP, respectively (table 1)."

        From:
        https://jnnp.bmj.com/content/jnnp/85/1/67.full.pdf

        And:
        "Some patients have a very mild form of RRMS, with minimal
        or no disability at least 10 years after disease onset, which
        is often referred to as benign MS. Although natural history
        studies have yielded conflicting results, most suggest that
        many of these patients will develop significant disability and
        enter the secondary-progressive phase of the disease within
        20 years. There are no reliable predictors to identify which
        patients will continue to have a mild course. Furthermore,
        neuropsychological testing reveals cognitive impairment in
        approximately 20% to 45% of patients considered to have
        benign MS."

        From:
        MJ Tullman - Am J Manag Care, 2013. Overview of the epidemiology, diagnosis, and disease progression associated with multiple sclerosis.
        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
        Anonymous

        Comment


          #19
          Pennstater

          That was my understanding too, but as independent as I am anything is not ok to me.

          Jules

          hopefully someone can find conflicting stuff. That’s beyond depressing and I couldn’t even read it all or I’d go down an even darker rabbit hole than I’m in now.

          That’s for sure something I’m asking that lady about Thursday

          Comment


            #20
            Originally posted by Daisycat View Post
            Pennstater

            That was my understanding too, but as independent as I am anything is not ok to me.

            Jules

            hopefully someone can find conflicting stuff. That’s beyond depressing and I couldn’t even read it all or I’d go down an even darker rabbit hole than I’m in now.

            That’s for sure something I’m asking that lady about Thursday
            Kathy made a great point… Time frame is critically important. The data in the study quoted was compiled with Canadian MSers from 1972 to 2000. The first MS med was not approved in Canada until 1995 so the reality is that this data reflects MS progression with zero people taking highly effective meds and extremely limited exposure to even the less effective DMTs.

            The study quoted was published in 2013, however, it clearly states the data was gathered from 1972 to 2000. Obviously, well before most of the FDA approved DMTs.
            Perhaps, one of the sobering takeaways is this is actually a legitimate look at progression minus DMTs because none were available in Canada before 1995.

            Plus, little was known about risk factors like smoking and low vitamin D. I don’t recall benefits in MS from diets, exercise, fasting, reducing stress, or increasing endorphins using LDN being talked about as much as they are now, either.

            So, take away meds, ignore risk factors and benefit strategies and you have the results of the study mentioned. Not Pretty. But the data is from a different era in treatment.

            Toss in Tysabri and you would have seen an astounding difference in MS progression.

            I realize you have taken Tysabri off the table, Daisycat, however, a new oral will very likely be approved in 2019 and it looks pretty darn good, too. And much, much less immune suppression than current highly effective DMTs. The treatment is Cladribine.

            Comment


              #21
              Originally posted by Myoak View Post
              Toss in Tysabri and you would have seen an astounding difference in MS progression.I realize you have taken Tysabri off the table, Daisycat, however, a new oral will very likely be approved in 2019 and it looks pretty darn good, too. And much, much less immune suppression than current highly effective DMTs. The treatment is Cladribine.
              Excellent points, much appreciate your input, as I was googling on the fly and while I don't totally discount the results the time frame that participants might have been on medications was not significant. Would you add studies you have seen regarding Tysabri and the astounding difference in progression? Its been around just over a decade so the data would be fairly reasonable especially because as I would suspect initially it was mostly the hard core cases who were started on it. The issue with any of the newer meds in my opinion is our progression can be stalled for decades 10-20 years, which isn't a bad thing but reduces my consideration of outcomes being heavily weighted on the medication's efficacy.

              I also think VitD is worthwhile and take it myself but I have found nothing robust supporting its efficacy in our prognosis. While another piece to the puzzle there is no way something so simplistic like a vitamin or LDN for that matter will end up being the holy grail for treating MS. The study below considered vitamin D and off label treatments. These are significantly better but still not what brings to mind the expectations we are likely to have an insignificant disease course as is often intimated here.

              "The finding that levels of 25‐OH vitamin D measured during the first 2 years of the study were associated with new focal MS lesions as expected,35, 36 but not with long‐term disability, provides additional support for the conclusion that short‐term changes in MS disease activity do not necessarily associate with favorable long‐term outcomes."

              "There are several important implications of these data for management of patients with MS. First, treating to target with 2‐year NEDA as the goal may not result in protection against long‐term disability. Second, neurological disability appears to evolve more slowly than estimated from older natural history cohorts. The availability of DMTs and escalation to higher potency therapies might account, at least in part, for the clinically important lower rates of disability accumulation and evolution to SPMS observed here. However, more than half of RMS patients treated with platform therapies still worsen over a decade of observation irrespective of short‐term MRI or clinical changes."

              "Over the 10 years of follow‐up, 225 (55.3%) RMS patients experienced a clinically significant increase in the EDSS score (Fig 1A and Supplementary Table 6)."

              "At a median time of 16.8 years after disease onset, 10.7% (95% CI = 7.2–14%) of patients reached an EDSS ≥ 6 and 18.1% (95% CI = 13.5–22.5%) evolved from RMS to SPMS. We estimated that only 4.7% (95% CI = 2.6–6.8%) of relapse‐onset patients reached an EDSS ≥ 6 at 10 years after disease onset and 16.2% (95% CI = 11.5–20.7%) after 20 years (Fig 2A). The risk of transition to SPMS was 6.4% (95% CI = 4–8.8%) 10 years after onset and 24.2% after 20 years (95% CI = 18.5–29.6%; see Fig 2B)."

              From:
              https://onlinelibrary.wiley.com/doi/...1002/ana.24747
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

              Comment


                #22
                Daisycat, I think you're jumping the gun, especially with no formal MS diagnosis. 18 years is no casual relationship and it kind of sounds like you don't want to be with him rather than letting him "free" from you.

                You never know what the future holds, I gave my husband (8 years married, 20 years together) that exact same option back in 2005 when I was diagnosed. Thank God he didn't leave, he's the love of my life and I would have strongly regretted it if he left, it would have told me that he didn't want to be with me either and just got a "get out of jail free card".

                Fast forward to 2016 when he needed a quadruple bypass and I became the caregiver. Then he was trying to give me the same option I gave him and I was so hurt. All I could think of was that he didn't want me caring for him because I wasn't good enough to do that. There were aspects of his care I couldn't do like helping him get up (no strength) or driving (legally blind) but keeping him company, playing silly board games, preparing his food for his special diet... was a pleasure. Obviously I didn't listen and kept on looking after him, it was very rewarding and actually made us closer, which I didn't think was possible.

                I hope you think good and hard about breaking up with him, he sounds like a gem.

                Jen
                RRMS 2005, Copaxone since 2007
                "I hope to be the person my dog thinks I am."

                Comment


                  #23
                  Daisycat - think I saw you have your appointment tomorrow with new neuro for another opinion. Good luck. Hope you get everything out of it you need.

                  Catmom - it sounds like you have been through so much together. I am sure the bond is so much closer - truly unconditional love.

                  Jules - I have nothing specific. It was more along the lines of what Myoak posted. The issue is that some of the stronger meds don't have enough of a long tail to evaluate long term disability. My comment was based on neuro observations and articles out of various MS publications that I get, where progression slowed with use of DMT.

                  I also find hope that so much research is being done, looking into repair, as well as the brain's neuroplasticity, that whether thru MS research or other medical research, options may exist should disability progress. So many amazing biomedical engineering solutions have helped people do what was once thought impossible.

                  Do I recognize that severe disability in activities of daily living may be a possibility for me, yes. Do I think that it is more likely than not, No. May I need a little more assistance than others, most likely. But I also wasn't diagnosed early on, nor on a DMT early in the process.

                  It inspires me when I see people at my infusion center who started on Tysabri early, have been on it 7-8 years, with no new relapses, no MRI changes, and with the exception of their 2 hours for the infusion, MS has not interrupted their life. I pray it stays that way.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #24
                    Originally posted by Daisycat View Post
                    Mamabug


                    I agree that he should have *some* say , buy I don’t want him to end up resenting me which a lot of caretakers end up doing. I offered him an “out” twice. (well five times if you count every day I was in the hospital), but each time he said no. I just don’t want him to end up hating me when we could end things as friends and still love each other but in a different way.
                    If you break up with him without it being a mutual parting, I suspect he'll be much more likely to resent your dictatorship than if you continue to offer him a choice.

                    If your fears end up happening, and you continue to offer him a way out, he'll know when, or if, to accept it.

                    After 18 years, this is not an "I" decision. It is a "we" decision. If you planned to grow old together, one of you will likely end up being a caregiver. That's life; that's commitment. That's love.

                    He's an adult. Let him decide. You don't necessarily know what's best for him.

                    Breaking up will likely not lead to parting as friends with good memories. That's an illusion. Breaking up will likely bring hurt, heartache and anger.
                    ~ 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


                      #25
                      I understand kind where you are coming from. It’s exactly why I’ve stopped dating. I’ve always wanted to be married and have kids. It was always my dream to be a mother. But I just turned 36 this month and was diagnosed with ms several years ago. It would be selfish of me to find love with someone who will eventually just become my caregiver. And it would be very selfish of me to bring children into this world.

                      However, you’ve been with your boyfriend for a very long time so at least sit down and discuss your fears with him...have a very serious talk before you make the decision for him to just end things. It may feel like you are doing the right thing, but I encourage you to really talk with him first.



                      “Keep your face to the sun and you will never see the shadows.”
                      ― Helen Keller

                      Comment


                        #26
                        "Would you add studies you have seen regarding Tysabri and the astounding difference in progression?"

                        Hi Jules,

                        The point of my post was that the sobering study on MS progression was based on data (1972-2000) before most DMTs existed and the few that did were/are not highly effective relative to Tysabri in slowing progression.

                        As far as the astounding difference Tysabri would make in progression we are fortunate to have a long term study recently published which demonstrates superb results over a ten-year period for German MSers taking Tysabri (natalizumab). Only 37.5% on Tysabri experienced progression in EDSS versus, it appears, nearly everyone in the older 1972 -2000 pre-med era study experiencing progression.

                        In the German 10-year study of Tysabri, 37.7% experienced an IMPROVEMENT in EDSS and the remaining 24.8% were stable for an astounding total of 62.5% on Tysabri having no progression in EDSS or an improvement in EDSS. Really a remarkable medicine, IMO.

                        A legitimate projection can be made based on the German 10-year study below that 62.5% of MSers reading this, including those who are worried about their futures, relationships, work, etc. should understand that if they were on Tysabri they would not progress in EDSS (disability) OR they would actually improve and have less disability than they have today! I think that is absolutely wonderful news and is an astounding percentage (62.5%) who are stable or improved compared to the dire 1972-2000 study.

                        I deeply, deeply regret not talking my spouse out of switching from Tysabri to Ocrevus. Ocrevus is effective but not nearly as effective as Tysabri; not in studies and certainly not in her personal experience. I am hopeful Cladribine will answer the challenge. I have been aware of it for many years but have only now begun looking at it carefully. And so far, it looks very, very good.

                        Best to you, Jules!

                        The study can be googled if the link does not work for someone

                        https://onlinelibrary.ectrims-congre...g=3*browseby=8

                        German real-world data from over 10 years in the TYSABRI® Observational Program: long-term effectiveness of natalizumab treatment in German patients with relapsing-remitting MS

                        Comment


                          #27
                          Originally posted by Myoak View Post
                          As far as the astounding difference Tysabri would make in progression we are fortunate to have a long term study recently published which demonstrates superb results over a ten-year period for German MSers taking Tysabri (natalizumab). .]
                          Found it, thank you. This one had an interesting take on the sensitivity of EDSS scores. Unfortunately all studies I found had Biogen's name all over them. Regardless the results are good but again it doesn't lead me to believe that long term our prognosis is great especially as we age.

                          https://journals.sagepub.com/doi/10....52458517709619
                          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                          Anonymous

                          Comment


                            #28
                            Slow down and take second

                            Daisycat,

                            I know this disease is scary! Overwhelming! Uncertain!

                            BUT take a breathe please and think this through. I know, can tell that you are and only want whats best for those around you. That your trying to something that is completely unselfish. However while trying to do a unselfish thing, you are being very selfish. I don't believe for a second that you know you are being selfish. Its just you trying to look out for others in what you see as a death sentence. This disease isn't a death sentence!!! Yes bad and not fun stuff CAN happen BUT THAT DOESN'T MEAN IT WILL HAPPEN. In this fun thing we call MS you can run the gamete of 100% fine to 100% "broken".

                            I've been married 19 yrs and have thought similar to you. Being with someone for 18yrs is a marriage. Just because you don't have paper doesn't mean that your not married! To take away his right to stay or go....that is selfish on your part IMO. Its different then the mom problem, your BF loves you and wants you, good, bad, ugly.

                            I'm sorry your having such a hard time right now. I recall how it felt when I was 1st DX. You can't fight this alone and need support. From the sounds of it you have that with your BF and friends. So you may have to find a new "normal" for your "fun, dating" part of life with your BF. OK!!! So ACCEPT the CHALLENGE and FIGHT! You will the spend rest of your life fighting at time for most things in life. DO NOT LET THIS DISEASE WIN AND TAKE YOUR LOVE FROM YOUR LIFE!!!!

                            Who told you this disease was a life sentence? I genuinely would like to know? Did your doctor tell you to break up? If yes what kind of doc was it? Neuro? Counselor? General Dr? Do they know your BF and you have together for 18yrs? Again that's a marriage and are you saying someone like myself should leave my hubby? I was given a walker just a few months into my dx and only used it for a month or so. I was taken off of work months after my DX and told to apply for disability. I was awarded it in record time with zero fight. I was given a dx in 3 days! All of these things tell me...my MRI are for To look at me you wouldn't know I pee my pants sometimes. That my hands don't work enough for me to make cakes anymore w/out help. You don't look at me and see my walking stick I ALWAYS have in my van. Or see that my right eye has caused me A LOT of problems. Ppl don't see that I'm ALWAYS in pain or that I can't run anymore, deal with heat or cold, eat out with out feeling like crap after due to stuff added into the food.

                            What's my point? YOU ARE OK!!! You HAVE to find a new normal or all you do is see the darkness and not any of the bright love around you!!! I don't believe in god just like you. I deal with my dad who is like your mom but taking what his says and just thinking "hey doesn't hurt for him to pray for a cure. Doesn't hurt for him to pray for me and make himself feel better." None of that hurts me. It all makes him feel better and thats ok. Your BF is the same way!!! What if he didn't take you up on the offer to leave because he wants to stay?!?!?! 🤯🤯🤯 What if doesn't see you as broken and damaged like you see yourself now or in the future? You see only the dark BUT WHAT IF ONLY YOU SEE THAT??? What if nobody else see's you as damaged goods? Or what if where you see caretaker they see a spouse that WANTS to WALK THROUGH LIFE WITH YOU!

                            I'll stop as I could write a book on this. A friend of mine was just DX a couple months ago and feels as you do. So I keep telling her to walk away and TRY TRY TRY to find some Light.

                            Allyson
                            DX 10/10, JCV postitive by a lot (said Nuero lol), Betaerson, Gilenya, Tecifidera, Aubagio now on Ocerevus

                            Comment


                              #29
                              Originally posted by isamadjul View Post
                              Daisycat,... I know, can tell that you are and only want whats best for those around you. That your trying to something that is completely unselfish. However while trying to do a unselfish thing, you are being very selfish. I don't believe for a second that you know you are being selfish...

                              Being with someone for 18yrs is a marriage. Just because you don't have paper doesn't mean that your not married! ... are you saying someone like myself should leave my hubby? ...

                              Or what if where you see caretaker they see a spouse that WANTS to WALK THROUGH LIFE WITH YOU! ...

                              Allyson
                              Allyson has some good advice.

                              I had been married for 17 years when I was diagnosed. We'd been together 20 years, counting dating. That was 17 years ago. We've been married 34 years. We've spent half our marriage with MS. I expect we'll have another 17+ years together.
                              ~ 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


                                #30
                                Mama Bug

                                That is AWESOME! To find someone to date and marry for such a long time...well if that's not a sign of Love Can Conquer ALL!

                                Allyson
                                DX 10/10, JCV postitive by a lot (said Nuero lol), Betaerson, Gilenya, Tecifidera, Aubagio now on Ocerevus

                                Comment

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