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Do we have any personal control over our M.S.?

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    That's right (Jules). And as new and better things are learned you will have the option of being on the cutting edge. Certainly more than either Richard or Montel. ... not even in the same ballpark.

    I just do the best I can day to day.
    Progressive Relapsing MS


      I don't believe that I'm burying my head in the sand, at least, I hope not. And, I realize that there are alot of things about MS that I am unable to control. I don't want to suggest, for a minute, that our symptoms are our own fault because we are not doing enough.

      However, I also don't think that it is simply that black-and-white. In spite of the fact that we may continue to have relapses, and our disease may progress, I don't think that that our control is limited to "nil".

      There are certainly things that we can do that may affect how healthy we are, and how quickly our MS progresses, or, doesn't progress:
      • whether we go on a DMR or not
      • whether we choose a healthy diet and a healthy lifestyle
      • whether we utilize CAM's that have some respect among knowledgeable people
      • whether we work to prevent stress when possible, and, manage it, when it's not possible to prevent it
      • etc

      It's not all-or-nothing. Yes; I believe that we have some control over MS. But, yes. I also believe that MS will likely present us with some challenges and some losses that we would not be faced with if we didn't have MS -- no matter what we do.

      ~ Faith
      ~ 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.


        Evening all. I've done the best I can, drugs, diet, valiant exercise etc, but I fear what was always going to happen has happened.
        Do I feel as though my plucky efforts made a blind nit of difference? Dunno.

        It could be worse, just not quicker, alas
        If it's early days for you, enjoy it. There may well be a cure, one day, though I fear I'll die wondering.


          Originally posted by Jules A View Post
          I might be missing something, wouldn't be the first time but I don't recall reading where anyone is blaming themselves for having this miserable disease or the course it takes. For me, like others have written, it is haunting but I definitely don't hold any guilt or responsibility into my faulty genetics or the unknown course it will take.

          KatieAgain and Thinkimjob, I am kind of glad I found out I have MS because I really have been able to make major changes that will be helpful when things hit the crapper so I'm ok that denial isn't an option for me.
          The original post implied that effort could ward off disease progression. I think that everyone with a progressive disease wishes that giving it your all is the answer. But that's not really true.

          Just as with cancer, some who try hard don't make. Some of us will take our meds, eat right, maintain a healthy weight, go to the gym, and still end up needing a cane or wheelchair.

          It's natural to look at others' course and hope that by imitating or doing the opposite we can "try" ourselves out of it. But I don't think that's possible.

          I also don't think that any of us should put that burden on ourselves. Do what you can to help yourself. But don't ever think that you didn't "try" hard enough.

          As the disease progresses and you find that no matter how hard you try, you can't do what you did before, you'll have to be easier on yourself - or you'll be wasting precious energy beating yourself up for not "trying" hard enough. Sometimes your mind will want something that your body just can't deliver. Be kind to yourself.


            Do we have any personal control over our MS?

            Maybe some. This is a subject I think about often. I hate any "blame the victim" mentality, when others tell us "Oh if you just follow this diet, do this exercise, take this supplement, you'll be fine." No, MS is not something that will be cured by Right Living. But...

            Years ago I read a book by Norman Cousins called Anatomy of an Illness as Perceived by the Patient: Reflections on Healing, about how he "cured himself" of serious heart disease and ankylosing spondylitis (an autoimmune disease), by laughter, support from friends and family, and a positive attitude. He would watch Marx Brothers movies and he always said that a few minutes of belly laughter from a movie would give him two hours of freedom from pain. He lived to age 75, far longer than his doctors predicted.

            Our bodies do try to heal themselves, and have some tools to do that. After I read that book, I became interested in a complicated field called psychoneuroimmunology (PNI). It studies how mood can influence brain biochemistry, which in turn can influence how one's immune system functions. It seems that "positive emotions" might stimulate the healing part of the immune system. I've noticed that when I am stressed out I am much more likely to catch cold or get a strep throat than I am when things are going smoother.

            I think there is something to this PNI, even though we don't understand it yet. And while I don't like to "blame the victim," I don't want to dismiss the possibility that a positive attitude, sharing laughter, enjoying time with family & friends - all might help our bodies fight off the effects of our disease.

            I take my Gilenya, see my doctors regularly and follow their advice, but also try to live a healthy lifestyle, have fun, and enjoy a funny movie or a good book. Can't hurt, might help!


              I’ve been watching this thread, and I want to thank Tawanda for starting it. I’ve been cogitating on this question since February when I realized my MS was controlling me and not the reverse. For almost six decades, I always felt I could control the external forces in my life, and after diagnosis three years ago, I knew I could “conquer” the MS. 3 years later, not so much!

              I am on Tysabri and Ampyra, follow the MS recovery diet, take supplements that should help, and exercise. I just knew if I did everything possible, I would at least slow down, if not stop, the MS progression. 3 years later, I realized this wasn’t going to happen. I did everything within my control, but the progression has continued, albeit I hope at a slower pace than if I hadn’t done anything, but then I’ll never know.

              This past February I realized the MS was controlling me and not the reverse. I was too wrapped up in trying to conquer MS, and life was passing me by. Plus, I realized I wasn’t sure if any of it helped! It was an “ah ha!” moment, and I vowed then and there to live my life to the best of my ability. I had been through all the stages of grief, and I believe I have finally reached acceptance (for now).

              I now have three goals in dealing with the daily challenges of MS: elimination of stress, modification of my environment to make it manageable, and anticipation of what my future might hold so I’ll be prepared. Last summer was awful for heat and humidity, and I was miserable. Last fall we had air conditioning installed; we are due for a week of hot weather, and I can smile because I will be cool!

              I am thankful my MS is relatively easy to deal with: no pain, no fatigue, no spasticity, no flares, no new lesions, no MRI changes, no nothing other than the walking and balance issues that led to my diagnosis. I am thankful I developed MS after almost 6 decades of a completely normal life and after I retired. I am thankful I have a reasonable retirement income and insurance! I am thankful I developed MS when medical research provided some assistance.

              I read a quote from Kathy Lee Gifford in the new AARP magazine. Her new mantra is “If you have a pulse, you have a purpose.” I believe I’ll follow the same philosophy….


                "Do we have personal control over our M.S.?"

                The answer is: We will never know. Since this disease is so individual and so unpredictable, how will any of us ever know if -- in our individual case -- the Tysabri or the exercise or the Jelinek diet or the vitamin D or whatever delayed our progression? It can't be known.

                I personally choose to invest in a specific medication and lifestyle regimen because I want to hedge my bets and because I have the option to do those things (can afford medication, can still exercise, etc.) Whether they will delay progression over the long term, I have no idea, but I do feel like I'm in control of my life.

                Maybe personal control over your life is even better than personal control over your M.S.?



                  If we didn't have control over getting it, why should we have control over IT?

                  At this very second I'm suffering with excrutiating pain in my rt hip 24/7 in addition to never ending TN. The only thing I can do is be optimistic that tomorrow will be a little easier . Positive attitude helps me get from hour to hour .

                  Day by day,