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Black & White Thinking Versus MS

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    Black & White Thinking Versus MS

    Recently, I have seen a number of posts asking for exact responses to unanswerable questions. Here are a few generic examples:

    - Does this symptom mean I am in a flare?
    - How long will this flare last?
    - How long will it take me to recover from a flare?
    - Should I stay on drug X?
    - I don't trust big pharma. Can I go without medications and do just fine?

    While these questions are all understandable, they do not reflect the unpredictability of the disease. Even so, most MS patients can understand how frustrating things are, especially for those in limbo or newly diagnosed.



    Twenty people can start a flare on the same day. Ten can be treated by steroids and ten not be treated.
    - There will be people that treat with steroids and fair better than others that did not have steroids. Likewise, there will be people that do not treat with steroids and fair better than others that did treat with steroids.

    - There will be people in both camps that have complete remissions and others that have lingering or even permanent disability.

    - Some people even go through a flare and never have symptoms. The symptoms can be subtle, or the lesions can be in unused parts of the brain. Undiagnosed people may start a flare and their medical teams never consider MS before the symptoms abate.

    - We currently have no way to determine how any particular person will respond to any particular medication. Some people will do great on Drug X and others miserable on the same drug.

    - With or without medications, some people will never experience another diagnosed flare up. With or without medications, some people will not have stable MS.


    The great unknowns are part of the maddening nature of the beast. Here at MSWorld we do our best to help as many people as possible. For every post, there are a number of people with the same question, but never asked. We learn from each other. We also cry, laugh, celebrate and mourn with one another. That's why the "Patients Helping Patients" motto means so much to me and thousands of others.

    We may never be able to answer your specific questions, but we hope to provide a safe environment for everyone to ask those questions. We hope that you find both sympathy and empathy for not just your question, but also for YOU. You are the reason MSWorld exists and thrives. So please continue to ask your questions, but don't get overly frustrated if we cannot give you a precise answer.

    I came from a computer background with very black & white thinking. Over the years, I have learned that MS is gray with far more unknowns than knowns and that is very frustrating. Over time, most people learn to roll with the punches, but it takes time (often years) to get to that point.

    One wonderful aspect of MSWorld is seeing people arrive here completely overwhelmed and shell shocked. After a little while, these same people are helping others and it's a beautiful thing. Hang in there ... and I wish you all well.

    #2
    Love this Marco and thank you!!

    These are all valid truths and may I also add this is a completely safe place to vent and cry if need be, share and brag about your successes, and support each other in non-threatening non-judgemental ways.

    We are family
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Good points. MS is unpredictable and not identical and white.

      However, many of those questions can be partially answered by presenting multiple possible scenarios.
      ~ 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


        #4
        Was supposed to read not black and white. Not sure how the word identical for in there. Must have been a typo followed by an auto correct.
        ~ 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


          #5
          Well said Marco. Unfortunately, it is usually when we feel our worst, whether physically or mentally, that we most want our questions answered. I know I have always taken comfort in the empathy people have shown, as well as the insight shared experiences provide.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            I agree. For me the worst part about MS is the Gaslighting factor. The only true givens seem to be that it is chronic and progressive. I hate it and yet we do the best we can to move on.
            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


              #7
              Wonderfully said Marco and Thank You.
              God Bless Us All

              Comment


                #8
                What is gaslighting?

                What is gaslighting?

                Comment


                  #9
                  Originally posted by samanthaelizabeth View Post
                  What is gaslighting?
                  Basically it means to question yourself...your sanity. There was a famous old movie called "Gaslight" (speaking of black and white) where an evil husband would secretly do things to makes his wife think she was crazy. I just remember the part where the husband hides one of his wife's earrings and says nothing when she blames herself for misplacing it.

                  I love B&W classics.
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                  Comment


                    #10
                    Nice write-up, Marco. I was thinking how radically different a Newbee MS Board would be from a Veteran MS Board. There is almost a bright red line between the two factions. But no matter where you are in this journey, it's nice to have a forum like this to turn to.
                    Tawanda
                    ___________________________________________
                    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                    Comment


                      #11
                      Still

                      Still so good at the words.

                      Well said Marco
                      God Bless and have a good day, Mary

                      Comment


                        #12
                        This disease is so frustrating because it can be one continual loss.

                        Comment


                          #13
                          Are you doing ok Marco? Hoping things are status quo, if not better. Sometimes status quo is a huge win. Take care.
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment


                            #14
                            Originally posted by pennstater View Post
                            Are you doing ok Marco? Hoping things are status quo, if not better. Sometimes status quo is a huge win. Take care.
                            I'm doing the best that I can. My MS is essentially stable. My comorbid conditions outweigh the impact that MS has on my life. Right now, my wife and I are both battling the flu.

                            That said, we are still very blessed. Thank you for asking.

                            Comment


                              #15
                              Originally posted by Marco View Post
                              I'm doing the best that I can. My MS is essentially stable. My comorbid conditions outweigh the impact that MS has on my life. Right now, my wife and I are both battling the flu.

                              That said, we are still very blessed. Thank you for asking.
                              Sorry to hear. I hope both you and your wife recover quickly from the flu. Rest up.
                              Kathy
                              DX 01/06, currently on Tysabri

                              Comment

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