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MS for 32 Years - Never Took Medication/Fearful of Starting

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    MS for 32 Years - Never Took Medication/Fearful of Starting

    Hello Fellow Fighters - I just signed up because I have learned so much from reading the threads. I was diagnosed when I was 26 because of a foot drop that came our of nowhere. My doctor ordered a MRI and I will never forget the results. I was told that there were lesions on my brain that were consistent with MS. I immediately prayed and asked God to protect me from the course of my life changing because of the disease.

    I was prescribed a round of prednisone and the symptoms faded. Fast forward over the 32 years since and I have had two optic neuritis attacks, one Bells Palsy like attack whereby the left side of my face was felt convulsed (eye visibly smaller than normal and mouth pulling to one side) occasional numbness in my hands and feet, twice to the extent where my ability to type was slower than normal, and generally a degradation of balance that eliminated wearing stiletto heals with confidence and holding onto a handrail when on steps is my standard safety measure.

    I have never had more than prednisone, and that has been on 5-7 occasions over all these years. I have gone for MRIs over the past 10 years roughly ever 2-3 years. The stance of my neurologists in terms of medication has always been the decision was mine with regard to taking medication because I was healthy and living life, freely moving about, working out (no I am not the perfect gym rat who is at the door at 6 AM five days a week) and I did not want to do injections.

    I have, however, always taken an array of vitamins. My Dad was an early proponent of the benefits of vitamins and over the years I have always taking a range that included D, E, Biotin, B12, C, Multi, fish oil, flax oil, and some other one offs I thought were cool at the moment. Fast forward to today. I am long married, though we never had children. I recently had an attack that really slowed my normally brisk pace. I was more prone to tripping in my own house. I called the neurologist and was prescribed a three day infusion of solumedrol. This was the first attack of its kind and for me the most alarming because I felt like MS had after 32 years made its presence known in a way that was not so subtle.

    Yes I could still walk unaided, but not like my norm. So, my neurologist and I went over my latest MRI and she pointed out two new lesions. I already knew I had non-enhancing lesions on my spine and brain. She no longer wants me to continue on my naturopathic, anti-poison (pharma drugs) path. She wants me to start Aubagio or Gilenya. I value her expertise but I am terrified of the SX of the MS drugs...gaining weight, losing my hair, brain infection. At 58, I know I cannot take 32 years of med free freedom for granted and I do not want to risk going into a drastic decline all of a sudden in my 60s.

    Can anyone tell me if they have had a similar journey or their ex with MS drugs? God Bless all and stay strong. If you believe in God, know that He hears and anwwers prayers!

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hi SheerWill

    Welcome to MS World - it's nice to see that you enjoy the forums.

    Glad to know that you have had a healthy and happy life for the past 32 years, while living with MS.

    Sorry that you have had a recent relapse, and must now deal with making a decision, which I'm sure is not easy to do.

    I don't have experience with the DMT's, so I'll leave that for other members to comment on.

    Good luck with whatever you decide.

    Wishing you the best.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      I have always been a proponent of the medications although it seems in your case you have done fairly well for many years without a DMD. In addition to hopefully staving off additional deficits an additional benefit might be that multiple steroid courses aren't necessarily a benign treatment either so hopefully you won't need as many if you are on a DMD. Best wishes with whatever you decide.
      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


        #4
        Hi SheerWill,

        After a long history of dancing with an MS diagnosis I've recently been recommended to take meds. As ambivalent as you are, I was recently given more faith in DMDs by this post from activemsers.org. Consider it an additional resource, with all the great perspective you're getting here.

        http://activemsers.blogspot.com/2011...arguments.html

        Rox
        All the best, ~G

        Comment


          #5
          Thank You!

          Great perspective on staving off other issues. That is what my neuro says too. I appreciate the feedback and will suck it up and take the plunge.

          Originally posted by Jules A View Post
          I have always been a proponent of the medications although it seems in your case you have done fairly well for many years without a DMD. In addition to hopefully staving off additional deficits an additional benefit might be that multiple steroid courses aren't necessarily a benign treatment either so hopefully you won't need as many if you are on a DMD. Best wishes with whatever you decide.

          Comment


            #6
            Powerful Article - A Must read for People Like Me -DMD Defiant!

            Thank you for sharing such a thought provoking article. It solidified my decision to get started. I have never read such an compelling article that speaks to the risks of not taking DMDs. I have been extremely lucky, but at 58 I am well beyond naive illusions of invincibility, I hope your DMD treatment keeps you well!

            Originally posted by gargantua View Post
            Hi SheerWill,

            After a long history of dancing with an MS diagnosis I've recently been recommended to take meds. As ambivalent as you are, I was recently given more faith in DMDs by this post from activemsers.org. Consider it an additional resource, with all the great perspective you're getting here.

            http://activemsers.blogspot.com/2011...arguments.html

            Rox

            Comment


              #7
              Hi Sheerwill!

              Thank you for sharing your experience with MS. When I was first diagnosed 5 years ago, it was the scariest time in my life. As I sat in the hospital (after being admitted from the ER because they didn't know what was going on with my double vision) at 3 am, I remember sobbing in the family room on the phone with my mom and she just gave me scripture after scripture and it was a balm to my soul. I know God heard my cries and continues to hear my prayers.

              When I was given the diagnosis a few months later and the dr told me to start researching which drug I wanted to go on, I was hesitant. All those side effects! It was daunting and scary. But I prayed about it and researched it and it was on these boards that someone told me something that, although I may not remember the exact wording, the message still resonates with me. They said that "While you can go off the medication at any time you wish, you can never go back in time to start it earlier." That was, to me, my answer to prayer about whether or not I should go on a DMD.

              Now, 5 years later, I have been on Tecfidera since then. I just turned 40 years old. I still play volleyball on a competitive league. I can keep up with my husband and two girls (7 & 9). I have had no new relapses and no new lesions. I still work full-time and even started a side job doing photography.

              I don't know what my life would look like without the DMD. Maybe it would look the same. But I keep telling myself that I'm not taking the Tecfidera to feel good NOW. I'm taking the Tecfidera to feel good when I'm in my 50's, 60's, 70's and beyond. That I can still enjoy being active, that I can enjoy retirement with my husband, that my quality of life later will be what I hope it to be.

              I know that tomorrow is not a guarantee, but for me, I felt like this was something I could do to protect my future.

              Now, I want to be honest with you--the side effects of the drugs. Yes, I have thinner hair than I used to--but I look at my mom (and dad!) and wonder if that's the drugs or just genetics. I have the occasional flushing which I wonder if has caused or triggered what I think might be rosacea. I am battling cavities, but again, is it the medication or just the way my teeth are? As far as the brain disease and the scarier side effects--the drs are aware of them--which is why they test you for signs of them. And if your blood and/or urine tests start looking out of the ordinary, they watch you and test more often.

              I encourage you to continue to pray for wisdom in this decision. I also encourage you to look at the message boards regarding the different types of medications and side effects (just remember that there are thousands more people who are on the medication who DON'T have side effects). And if you see something that you would like better than what your dr is suggesting, then talk to your dr about it.

              Ultimately, as you know, it's YOUR decision! I wish you all the best!

              Comment


                #8
                DMD?

                Sheerwill,

                You have me by 1 year. My MS kicked in about 31 years ago with left foot drop. I was very active, healthy, played lots of sports, and was a 5K runner. But unlike you, I did not ask for God’s help, was grateful for what abilities I still had and have today, and did take my doctor’s recommendations.

                Took DMDs for many years, on and off Avonex, Copaxon, Rebif, and hated them all. Also took several pills, Carbamazapine, Nuerontin, prednisone, and others and never liked taking pills even aspirin for a headache. Do not like shots or side effects although they usually diminish with time. Not a big vitamin/supplement person either, prefer to eat well to get required nutrients.

                I always read the fine print and details of any studies and was not impressed with any of the stats, the % improvement seemed marginal at best. I honestly don’t think that any of the DMDs helped, but they did reduce my quality of life. So, I quit taking any about 8 years ago and did not notice a change, just felt better.

                However, I did start taking Rituxan (predecessor of Ocrevus) just over 4 years ago and my progression has seemed to have slowed a bit. I never noticed any improvement while on a DMD. I believe that there are 2 treatments today that are the most effective, but you really need to do your own research and not just go with what the drug companies and all the bleeding hearts tell you. Note also that even in the scientific studies a lot of patients experience improvements due to the placebo effect.

                1. Rituxan/Ocrevus have some positive results as I just stated
                2. The recent study and post on using your own harvested blood stem cells to reboot your immune system. (but seems targeted toward younger population with RRMS, not for us older/progressives)

                My suggestion is to talk to your doctor about Rituxan/Ocrevus if you haven’t already. The results of the studies are much better than any of the DMDs. But you probably won’t find any studies on Rituxan for MS because it’s not financially beneficial for the drug company to do one since they are pushing the more expensive Ocrevus.

                I will be 61 this year, still walk with/without a cane, have many common symptoms, weakness/muscle atrophy on my left side, pain, stiffness, tingling, numbness, heat sensitivity, intense itching at times (uncommon), and others. I have a technical/engineering background and taught middle school sciences for 12 years, which I am stating only to let you know that I do try to look at things critically and make informed decisions.

                Best of luck (and God’s will)
                Scott

                Comment


                  #9
                  Sheerwill,

                  My experience has been so similar to yours that I felt I needed to respond! I had very minor and intermittent symptoms over the years, starting with double vision in my early 20's. My only other real symptoms were some hand and foot numbness and bladder issues. I wasn't diagnosed until 2013 when I was 49, and went on Aubagio at that time, since my neuro thought it would give me a better prognosis for the long term.

                  Since my diagnosis I am much more aware of balance issues and instability walking than I was aware of prior. Even though I would love to wear cute shoes, I recognize that I'm much more stable in a lace up running shoe. I have sprained my ankle three times in a 6 month period, so I have just had to learn to slow myself down and really be careful where I walk.

                  I haven't had too many side effects from the Aubagio at all. I have lost a lot of hair, but it's so fine and thin anyway, that I don't think it's that noticeable. I haven't noticed that it's caused any excess weight gain, I would attribute that to being able to move and exercise less. Unfortunately, long walks are much harder on me a lot of the time than they used to be.

                  I have also taken a good supply of vitamins, including all of the ones you mentioned. I take a lot of Vitamin D, and my numbers whenever they're checked are all in the right range. If I were you, I would not hesitate to follow what your doctor suggests as far as using a DMD. Aubagio has been fine for me, where I was not a candidate for Gilenya, and couldn't tolerate Tecfidera.

                  Best of luck to you!

                  Comment


                    #10
                    Originally posted by gargantua View Post
                    Hi SheerWill,

                    After a long history of dancing with an MS diagnosis I've recently been recommended to take meds. As ambivalent as you are, I was recently given more faith in DMDs by this post from activemsers.org. Consider it an additional resource, with all the great perspective you're getting here.

                    http://activemsers.blogspot.com/2011...arguments.html

                    Rox
                    Thank you for sharing. I love this! And also found another of his posts about DMDs.

                    http://activemsers.blogspot.com/
                    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


                      #11
                      Originally posted by Jules A View Post
                      Thank you for sharing. I love this! And also found another of his posts about DMDs.

                      http://activemsers.blogspot.com/
                      He's very inspirational. He expresses his downs freely, but somehow makes them educational and humorous at the same time.

                      Researching DMDs takes so much work. Every day I find out something different. Yesterday I found this great link, which many people here probably know about. It's geared toward doctors, but it is worded pretty clearly, and if nothing else might be a good start for questions for one's doctor.

                      https://bit.ly/2KJneHr
                      All the best, ~G

                      Comment


                        #12
                        Originally posted by Jules A View Post
                        Thank you for sharing. I love this! And also found another of his posts about DMDs.

                        http://activemsers.blogspot.com/
                        Thanks for the additional link Jules. Yes he's very inspirational. He expresses his downs freely, but somehow makes them educational and humorous at the same time.

                        Researching DMDs takes so much work. Every day I find out something different. Yesterday I found this great link, which many people here probably know about. It's geared toward doctors, but it is worded pretty clearly, and if nothing else might be a good start for questions for one's doctor.

                        https://bit.ly/2KJneHr

                        (re-sent because I'm not sure the last one went through)
                        All the best, ~G

                        Comment


                          #13
                          I took a DMD for many years (back when I was diagnosed B, then A&C, were the only meds available. My neuro recommended B, so I went with her suggestion.) I tolerated it well and
                          used it up until I was classified SPMS.

                          All I wanted to add to this great thread is the motivation it took for me to start Betaseron
                          shots. My neuro said, "Just because you start it, doesn't mean you can't stop it. Just give
                          it a try and some time, and see what the results are." Those words motivated me to start
                          and I never quit until the SPMS label. I know now there are meds that folks with SPMS and even
                          PPMSers try. But since stopping Betaseron, my MRIs have been stable, although I'm dealing
                          with more disability, but that is a result of the damage that had already been done long ago.

                          Comment

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