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Here’s how not to be an idiot (like me)

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    Here’s how not to be an idiot (like me)

    At the age of 50, I was Dx with RRMS. Started Copaxone and had no further disease activity. That was 7 years ago.

    For a variety of what I thought were very sound reasons, I went off my DMD last year. It was a mild one. Just learned today I have 4 new lesions—including one on my brainstem.

    No symptoms (well maybe one), but feeling really really dumb. Stupid gamble. Going forward, I’m just going to do what my doctor says.

    #2
    I don't think you're an idiot for discontinuing your meds, but I do think you got lucky as far as symptoms go. With some conditions (like MS) there's no daily reminder of why you take your DMD and it gets easy to "forget" to take it... even on purpose.

    I think I missed you in the chat this morning or yesterday morning. There are a few of us that still chat, so feel free to come back sometime.

    Comment


      #3
      When I was dx in 1988 there were no meds. I did healing prayer and meditation for 13 1/2 years - had no sx. If I had been on any med, the first was 1993, they would've taken credit for my doing well.

      I got cocky, thought they miss dx me, stopped my regimen and ms reared it's ugly head.

      I went on Copaxone for 2 1/2 years, my sx and lesions progressed . I then was blessed to get on Tysabri, reduced the size and amount of lesions and I had no new or active lesions, less sx and a great QOL-this was a little over 12 years ago. I am now 70 years "young"-it may be age, ms ?? sx not doing quite as well-still I have a decent QOL. My ms specialist said (2-3 years ago) with age ms slows down, maybe time to go off Ty..I said.."if it ain't broke, don't fix it"..I do get infused every 56 days instead of 28.

      I have always made my own decisions, listened to my choices. I had 3 Drs between 2006 and 2011 who told me they were taking me off Tysabri..I changed Dr's.

      This is some of my story just thought I would share !

      Good luck and best wishes
      Linda
      Linda

      Comment


        #4
        Mable, your title made me laugh, even though it's not funny at all. I will remember your post as long as I'm on Copaxone. I've been on it for almost 12 years and there are many times I've thought I'm doing ok and should stop... not now! Thank you for sharing your experience, I hope it helps people like me who think we're "ok" but really are not, just extremely lucky we have a medication that's working.
        Jen
        RRMS 2005, Copaxone since 2007
        "I hope to be the person my dog thinks I am."

        Comment


          #5
          Glad to hear your story, Linda

          Hi Linda,

          I’ve been off this forum for a long while. But I think I remember you posting every month when you got a dose of Tysabri—letting folks know how many infusions you’d had and how you felt at a time when there were very few long-time users.

          Anyway, once again I’m glad to hear from you. I’m 57 and also in Colorado. We might even go to the same MS Center.

          I was on Copaxone, and clearly responded well to it. But I am freaked out about brain atrophy, and I think Tysabri has a better history of normalizing it. Not sure what my neuro will suggest when I return to him next week.

          Do you have any insight into how you are doing with regard to brain volume? I had my first MRI that measured it when they found the 4 lesions last week. I have a low EDSS, but my gray matter looks pretty ragged.

          Comment


            #6
            12-years

            Good for you, Cat. How is your MS progressing overall?

            Comment


              #7
              How do you know the state of your grey matter? My MRIs only show white matter. What imaging have you had done to see it?

              Comment


                #8
                Gray vs white matter

                Google Neuroquant. It’s a software that measures white matter, gray matter, overall volume, various ventricles, etc.

                Then it compares you to a huge database of healthy people your age.

                I learned that my brain is in pretty good shape for a 70-year old. Too bad I’m 57.

                Comment


                  #9
                  Linda,
                  I'm turning 67, and at 65 began questioning how much Tysabri I needed. I'm JC negative, so I could have stayed on every 28 days forever. However, after reading about extended dosing, and needing a break from the 28 day cycle, I began extending my infusions. I'm now at every 49 days and have noticed no difference at all...other than I finally have my life back.
                  I started the move with my old neurologist, but she moved and now I'm seeing her PA. She wasn't too thrilled but agreed to every 6 weeks BUT NO MORE! Yeah, right. However, six months later when I went in and was prepared to present my case for every 7 weeks, she was all for it. A Houston neurologist presented the case for extended infusions, and now I can move to 8 if I want.
                  I just don't know that I'll ever give up Tysabri. MS is such a fickle disease, that I'm just not willing to take the risk. 8 pokes a year I can live with. Self advocacy is one of the most important skills when diagnosed with a chronic disease.

                  Comment


                    #10
                    Mable,

                    Have you looked into Alpha Lipoic Acid? You mentioned you are in Colorado, and it was Dr. Corboy from the Rocky Mountain MS Center that mentioned it was good for cognition. This article mentioned that it shows some promise in helping with preservation of brain volume.

                    https://multiplesclerosisnewstoday.c...-acid-for-rrms

                    I've been taking it for a year or so, and it's easy to take. The price is reasonable, with no side effects.

                    You might want to look into it.

                    All the best.

                    Comment


                      #11
                      I'm scared to go off Copaxone. During the first 2 years of MS, I was undiagnosed, so I wasn't on anything. The next five years, I was on Betaseron, but it was fairly ineffective for me; I had regular (once or twice a year) flares that were pretty severe.

                      After switching doctors, I went on Copaxone, which has worked much better for me. MS meds are supposed to reduce fx and severity of flares. Copaxone has definitely done that for me. They are also supposed to delay progression. My MS Specialist tells me that, the way meds delay progression is by reducing fx and symptoms in early years, so that, in later years, there are fewer existing lesions to "progress". Unfortunately, the first seven years, prior to Copaxone, I accumulated a lot of lesions.

                      I'm currently moving from RRMS into SPMS. At some point, I suspect that my MS Specialist might be ready to take me off Copaxone. The thought of going off scares me; I don't want to go back to how things were in the past.
                      Last edited by Mamabug; 01-26-2019, 06:22 PM.
                      ~ 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


                        #12
                        Brain atrophy is a critically important factor when considering a DMT because brain atrophy correlates with disability, as the study at the bottom demonstrates.

                        But first, there was a helpful post today on brain atrophy at this MS site…

                        Beyond NEDA

                        https://multiple-sclerosis-research....1/beyond-neda/

                        Quote, “ A patient of mine, who I have been looking after now for over 11 years, asked me in clinic a few weeks ago why despite being NEDA for 6 years, on a highly effective maintenance DMT (fingolimod), has she gone from being able to run 5-10 km to needing a stick and barely managing to walk from the Whitechapel Underground Station to my clinic (~200m), without having to stop and rest?

                        What this patient doesn’t know, despite no new visible T2 lesions, is that she has developed obvious, to the naked eye, progressive brain atrophy. This particular patient prompted me to write a few blog posts to try and explain what is happening to her brain…

                        An important question in relation to this patient is why do some DMTs have such a profound impact on end-organ damage markers, in particular, brain volume loss and others do not? Not all DMTs are made equal when it comes to preventing, or slowing down, brain volume loss.

                        At the top of the league table are alemtuzumab and HSCT (~0.2-0.25% loss per annum). Both these treatments are NIRTs (non-selective immune reconstitution therapies). Natalizumab is next with an annual brain volume loss in region of 0.25-0.3% per annum. Ocrelizumab comes fourth with a rate of brain volume loss of ~0.35% per annum. Fingolimod 5th at 0.4% per annum. Cladribine 6th at ~0.55% per annum and then the other runs after that.” End Quote

                        The study below shows disability correlates with brain atrophy.

                        Treatment Effect on Brain Atrophy Correlates with Treatment Effect on Disability in Multiple Sclerosis
                        url

                        https://pdfs.semanticscholar.org/aa7...544a52a997.pdf

                        Comment


                          #13
                          Originally posted by lindaincolorado View Post

                          I went on Copaxone for 2 1/2 years, my sx and lesions progressed . I then was blessed to get on Tysabri, reduced the size and amount of lesions and I had no new or active lesions, less sx and a great QOL-this was a little over 12 years ago. I am now 70 years "young"-it may be age, ms ?? sx not doing quite as well-still I have a decent QOL. My ms specialist said (2-3 years ago) with age ms slows down, maybe time to go off Ty..I said.."if it ain't broke, don't fix it"..I do get infused every 56 days instead of 28.

                          I have always made my own decisions, listened to my choices. I had 3 Drs between 2006 and 2011 who told me they were taking me off Tysabri..I changed Dr's.

                          Linda
                          Linda, congrats on being a woman who has made better decisions than the doctors who wanted you off Tysabri! IMO, you life would be changed dramatically, and for the worse, had you followed their extremely unwise advice.

                          IMO, you are definitely on the right path by continuing with Tysabri. I will make a prediction... in a few years the advice to go off a highly successful DMT because "with age MS slows down" will be viewed as HARMFUL to a patient's health. In a few years, looking back, doctors will view that idea as valuable as blood-letting, IMO.

                          Stick to your guns and you will more healthy than you would be listening to the people who have a track record of being wrong on whether to stop or continue your present DMT. God bless you!

                          And Kris, great article on Alpha Lipoic Acid. I have taken it for many, many years w/o any problems and, of course, I believe it is helpful for the reason your article present. I recommend Dr. Berkson's book, "The Alpha Lipoic Acid Breakthrough". I have spoken with Berkson at conferences and at his practice (now retired) and the man is the real deal. Best to you!

                          Comment


                            #14
                            Alpha Lipioic Acid

                            [QUOTE=ru4cats;1516974]Mable,

                            Have you looked into Alpha Lipoic Acid? You mentioned you are in Colorado, and it was Dr. Corboy from the Rocky Mountain MS Center that mentioned it was good for cognition.

                            Funny thing about that, Cats. Dr Corboy is my neuro; he wasn't thrilled when I told him last year that I'd quit Copaxone.

                            I've only seen him a couple times, but will definitely be seeing him this week. I plan to talk to him about ALA. And natalizumab. But first I will probably need to eat some humble pie.

                            Comment


                              #15
                              Why did Giavononni wait?

                              Originally posted by Myoak View Post
                              “What this patient doesn’t know, despite no new visible T2 lesions, is that she has developed obvious, to the naked eye, progressive brain atrophy.
                              Exactly MyOak! I'm a huge fan of Giavonnoni et al, but why didn't he tell his patient years ago that her Gilenya wasn't controlling her brain volume loss?

                              When I got my first MRI in 2012, I thought it looked like there was atrophy. My neuro dismissed me. That's a big part of the reason I went to Denver.

                              Comment

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