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    #1

    Anyone NOT on Meds DMT and doing well?

    Hi everyone!

    I was diagnosed with MS in 2008. I was on Copaxone for 6 years came off 2 separate occasions. I came off it last year because I had a severe allergic reaction to the medication. I live pretty much symptom free... occasional numbness in my hands and feet if I over exert myself but that's not too often.

    I just got results back from my MRI. They found 2 new lesions Nuero highly suggesting I get back on DMT. The 2 that he suggested was Tecfidera and Aubagio deathly afraid of the side affects of both.

    Thinking of managing my MS without DMT but I'm scared of that decision too.

    Anyone managing there MS without DMT and doing well with have no signs of progression on MRI?

    If so what are you doing to manage it this way?
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    #2
    I was DX'ed in 2002 have never taken any DMD's. I get an MRI ever 2-3 years and while I have had some progression I feel pretty good. I probably have a total of 8-10 lesions IIRC. I am trying to get another MRI scheduled before the end of the year so I can reply back with an update at that time. I have some symptoms and the occasional bad day but am able to do anything I want and more on most days.Opinions vary and your mileage may vary but this bug manifests itself differently in everyone. What's good for me may not be good for you or anyone else. Fuel your body with healthy foods and exercise as much as you can- thats good advice for anyone.
    The future depends on what you do today.- Gandhi

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      #3
      No DMM's

      Hi Meagain

      Yes I didn't take any DMM for about 12 years after diagnosis. I did really well back then completed further college studies, very few attacks and felt great. 20 years after diagnosis I wish someone had of explained why taking DMM was so important, but now its a too late for regrets. I see others are in much better condition than me.

      Regards

      Comment

        #4
        Originally posted by reasonable View Post
        Hi Meagain

        20 years after diagnosis I wish someone had of explained why taking DMM was so important

        Regards
        Can you please explain why taking a DMD is important? Thanks.
        The future depends on what you do today.- Gandhi

        Comment

          #5
          Originally posted by Boudreaux View Post
          Can you please explain why taking a DMD is important? Thanks.
          This is not a complete answer, but may answer many of your questions.
          http://www.msworld.org/forum/showthr...Drug-Selection

          Comment

            #6
            Originally posted by tellmeagain View Post

            Anyone managing there MS without DMT and doing well with have no signs of progression on MRI?

            If so what are you doing to manage it this way?
            On average, if you have 80 people in a room there will be at least 2 people that share a birthday. If you ask MSWorld if anyone shares your birthday I can almost guarantee you that several people would.

            Unlike your date of birth, your disease course is unique to you.
            There are people that never take a DMT and do well. There are also people that faithfully take DMTs and rapidly decline.

            I tend to equate DMTs like a seat belt, they don't guarantee your survival in a wreck, but they do improve your odds. Likewise, on average, our medications alter the natural course of the disease decreasing the number of lesions and flare-ups we experience.

            At the same time, improving your health by improving your diet, sleep, physical fitness, etc is good for everyone, including MSers. We also know that and decreasing stressors, stopping smoking, etc are beneficial to MS patients. So do these things, but don't expect them to slow the natural course of the disease.

            The more potent medications are helping many patients reach a state of No Evidence of Disease Activity (NEDA). For now, that's as good as it gets including a clean MRI. Remember that MRI technology has limits, but remains our best gauge for lesion activity. Take a look at this http://www.msdiscovery.org/news/news...more-meets-eye

            I wish you well and hope you find peace in whatever decision you make. It's certainly a personal decision and many people have elected to not use DMTs with "success." Personally, I gladly take my DMT just like I faithfully buckle my seatbelt while in a vehicle.


            Can you please comment on why you are "deathly afraid" of possible side effects, but ok with actual new lesion activity?


            Many people take aubagio and tecfidera without any side effects. There are also a number of other options besides just those two. Have you considered getting another opinion from a different neurologist?

            Comment

              #7
              Originally posted by Marco View Post
              This is not a complete answer, but may answer many of your questions.
              http://www.msworld.org/forum/showthr...Drug-Selection
              Thanks Marco but my question was not one of generalities as I am aware of the intent of the drugs and the side effects.

              I have a different opinion on the importance of the DMD's and was genuinely interested on why reasonable felt that taking them was so important.
              The future depends on what you do today.- Gandhi

              Comment

                #8
                Control

                Marco's points were spot on. If it were possible to be on DMT I would be but I seem to have run out of options.

                For me the "why?" is about control. My body has forsaken me and waged war and I am helpless too stop it from happening. DMT's allowed me to think I was at least trying to do something to slow progression, whether it was effective or not, I can say I tried.

                Diet, exercise, meditation etc. will not cure you it allows you that feeling of control and there is no science to show it slows progression.

                Your body, your decision.

                Peace,
                Anna

                Comment

                  #9
                  You asked why DMTs for those of us on them? For me it was about slowing the progression of the disease.

                  I was dx with CIS, so by definition I have only had 1 attack. I have a bunch of lesions, and my CSF indicates I have all the associated proteins. There is a 20% chance this was my only attack and I would never go on to have another. However due to imaging results and my CSF, I am in the category where I have an 80% chance of developing another attack.

                  As MS is so unpredictable, you never know what the next attack will be. My current one is fairly mild as far as attacks go but what if the next one is not? What if the next one renders me unable to move a leg? Or a foot? or an arm? Or my vision? The science is pretty strong that the most of the DMTs, especially the current generation (the oral ones) do really well at preventing further progression.

                  The science backs the fact that at this stage, they are the most effective. They can't make things better but they can make it from getting worse. With me having very little progression at this point, it makes sense to stop it here rather than waiting until I am half immobilized to do so.

                  Will they 100% for sure? No, but the odds are good in preventing further disability progression. For me that is absolutely worth it. My doc recommended the orals and I chose Gilenya and have done really well on it so far. I've been on it for a few months and will undergo more MRIs early next year to see if I have any new lesion activity.

                  ** 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. **

                  Comment

                    #10
                    Too much at risk

                    I was diagnosed 20 years ago. Just yesterday I was at my neurologist. I'm a little spooked at how well I've done. I am so very aware of how things could have gone another way for me and while I deal with annoying symptoms, I walk and live normally. I asked my neurologist why I've been so lucky. My initial MRI was not promising. His response: you've stayed on the medicine. He told me how people with MS don't take meds, he told me how many people who take meds skip doses. I have never played that game. I wanted to do everything I could to up my chances of staying healthy. I don't know you, but I urge you to go and stay on one of the drugs. There's too much at risk.

                    Comment

                      #11
                      Hi Boudreaux,
                      Let me begin by fully disclosing that I've been reading this board, several times a day, for about 5 years. I believe that I may be one of the most annoying MSer's on this site. Now to your point, I have PPMS and, until this year, there hasn't been any DMT/DMD . The DMD's available before 2017 were developed and FDA approved to treat RRMS. When I realized, 8 years ago, that progressive MS had no drug therapies, and there were 12 or 13 approved DMD's for treating RRMS, I began emailing and screaming at the FDA and the NMSS about this outrage. So, this year, I stopped screaming (about that point, anyway).
                      I believe that the data is clear that your chances of slowing the progression of MS is increased by being on a DMD. I have been infused with Lemtrada and will be infused with that drug for my second and final round in January 2018. I hope that you find your answer, and that decision turns out well for you. I went on about my life without treatments for about 8 years and my health suffered.
                      Your MS is YOUR MS. MS is extremely individual. I would find a DMD, if I were you. Good luck.

                      Comment

                        #12
                        I was dx in 1988-no meds. I did healing prayer and meditation for 13 years. I appeared free of ms, so I gave up what kept me free of ms and within a short time started showing sx. I went on Copaxone a couple years later (Dr didn't take good care of me) for 2 1/2 years-I was progressing. A new Dr rx Tysabri and I have been on it for over 11 years and now go to the RMmsC for 6 1/2 years. Progression halted, many sx abated - a little less, now-still, love my QOL

                        p.s. for the 13 years I was sx free, if I had been on a med they would've taken credit for it
                        Linda

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