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    #16
    REG: I am on Tysabri, am JCV+ with a titer of 3.5. I am paralyzed from the waist down. How do I get through it. I say you walk right through it. Put one foot in front of the other, and when you can no longer walk put one wheel ahead of the other. Just keep moving forward. Keep moving at all. I am also a patient with an EDSS of 7. But, I keep smiling, laughing, going out with my friends just like I would do if I were not sick.

    I went from jcv- to jcv+ in 6 months. Be careful, and make them test you every three months. Don't rely on the TOUCH program. your doctor has to write the order.

    Keep on keepin' on
    feel better
    Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment


      #17
      Drmarc, I will not deny that MS is a horrible disease, but I know for a fact MS progression can be stopped and reversed. For me it happen after 9-years Dx. and fighting progression, I got blessed by being a Ampyra super responder.

      Since 2010 I no longer have a drunk walk, brain fog, numbness, and etc.

      It has been a daily fight but my yard work endurance has gone 20min max. with needing a 2-hours break to 2-hours productive yard work and only needing 10-20min break before going out again.

      I know I’m not cured and that diet, meds, exercise, spirituality, and more will not make me safe from progression. But I also know that MS is not helpless nor an endless nightmare.

      FYI: did you know that they are testing three existing medicines to see if they can be repurposed for treating SPMS. (bbc com/news/health-32136208) So if they show good signs of work they can go to market without going thou 3 stages of trials.
      • Amiloride - licensed to treat heart disease
      • Fluoxetine - used in depression
      • Riluzole - for Motor Neurone Disease
      Give life meaning, live life by the 9 Noble Virtues.

      Comment


        #18
        Originally posted by Sir-Voor View Post
        Drmarc, I will not deny that MS is a horrible disease, but I know for a fact MS progression can be stopped and reversed. For me it happen after 9-years Dx. and fighting progression, I got blessed by being a Ampyra super responder.

        Since 2010 I no longer have a drunk walk, brain fog, numbness, and etc.

        It has been a daily fight but my yard work endurance has gone 20min max. with needing a 2-hours break to 2-hours productive yard work and only needing 10-20min break before going out again.

        I know I’m not cured and that diet, meds, exercise, spirituality, and more will not make me safe from progression. But I also know that MS is not helpless nor an endless nightmare.

        FYI: did you know that they are testing three existing medicines to see if they can be repurposed for treating SPMS. (bbc com/news/health-32136208) So if they show good signs of work they can go to market without going thou 3 stages of trials.
        • Amiloride - licensed to treat heart disease
        • Fluoxetine - used in depression
        • Riluzole - for Motor Neurone Disease
        THANK YOU FOR YOUR RESPONSE. YES AMPYRA DID WORK FOR A COUPLE OF YEARS, BUT NOW INTO YEAR 30 OF THIS DISEASE AND WITH THE PROGRESSION NOW OCCURRING AT EXPONENTIAL SPEED, THERE IS NO TREATMENT. THERE IS ONLY TERROR, ANGER, DEEP SADNESS, AND EXTREME HOPELESSNESS. THE NEUROLOGIST HAS NOTHING TO OFFER. THERE IS NOTHING ON THE NEAR HORIZON. AND AS PREVIOUSLY STATED, EACH DAY BRINGS YOU CLOSER AND CLOSER TO THE CRASH.

        YOU CANNOT ADJUST TO THE NEW NORMAL BECAUSE EACH DAY YOU LOSE MORE OF YOUR ABILITIES AND/OR A NEW LEVEL AND LOCATION OF PAIN ARISES. ADJUSTING TO A DISEASE THAT IS EVER CHANGING AND NOT IN A GOOD WAY IS LIKE TRYING TO CATCH A SNOWFLAKE, IMPOSSIBLE. ANGRY???? ABSOLUTELY. AND THOSE WHO TRY TO PUT A POSITIVE SPIN ON MS ARE SIMPLY DELUSIONAL AND IN THAT DELUSION THEY CONVEY THE PUBLIC THAT THIS IS NOT THAT BAD OF A DISEASE AND THEREFORE SO LITTLE EFFORT AND ATTENTION IS GIVEN.

        IF MS WERE TO IMPACT THE PUBLIC LIKE HIV DID THERE WOULD BE EFFECTIVE TREATMENTS TODAY AS THERE ARE FOR PEOPLE WITH HIV. THE DMD'S ARE A JOKE. HAD THIS BEEN GIVEN 30 YEARS AGO EVERYONE WOULD BE SAYING WOW LOOK HOW HE WENT INTO REMISSION FOR 20 YEARS. NO IT WAS NOT A DRUG, JUST THE NATURAL COURSE OF THE DISEASE. AS EVERYONE WHO HAS EVER WORKED WITH MS KNOWS, "IT NEVER ENDS WELL."

        **Edited by moderator in compliance with guideline #1 which states: "INTERNET ETIQUETTE: Show respect for others at all times.

        Comment


          #19
          Originally posted by drmarc View Post
          ...

          It is about time that those with MS and those who love those with MS stop perpetuating the myth that having MS is not that bad, that having MS is something you can adjust to, that having MS is something you can live with because it is NOT!

          I hope you can handle the truth.
          That is your truth, drmarc. My truth is that, although I do not, and never will, like MS, I have, absolutely, adjusted to it. And, MS is something that I can live with, and am living with.

          We all have our own truth. I am glad that you do not get to decide what my truth is. If you did, my life would be less grateful, less happy, less content. I hope that, some day soon, your truth will change and you will begin to adjust to, accept, and live with your MS in a more contented way. You deserve that.
          ~ 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


            #20
            Originally posted by drmarc View Post

            IF MS WERE TO IMPACT THE PUBLIC LIKE HIV DID THERE WOULD BE EFFECTIVE TREATMENTS TODAY AS THERE ARE FOR PEOPLE WITH HIV. THE DMD'S ARE A JOKE. HAD THIS BEEN GIVEN 30 YEARS AGO EVERYONE WOULD BE SAYING WOW LOOK HOW HE WENT INTO REMISSION FOR 20 YEARS. NO IT WAS NOT A DRUG, JUST THE NATURAL COURSE OF THE DISEASE. AS EVERYONE WHO HAS EVER WORKED WITH MS KNOWS, "IT NEVER ENDS WELL."
            drmarc - I do have to agree that if MS was contagious, much more would be spent on finding a vaccine and/or a cure. Thankfully though, it is not. I would hate to pass it along. I am also sorry for the course your progression has been on and the fears you face each day.

            But I disagree that DMDs are useless. Initially, my remissions were long, for which I am grateful. They then started to come more frequently, bringing new symptoms, worsening old, and leaving some damage after they left. Each DMD worked for a while, then cycle would start again. But it slowed. Now with Tysabri, slowed again for 2.5 years. I will take that anyday.

            MS or not, it never ends well. We all wind up in the same place some day. Since I am not in the same place with the disease course that you are, I can respect how you feel. But I hope that if/when I do wind up with severe progression, I can adapt, as I can't live angry every day, or I won't live at all.

            I would never tell someone MS isn't bad, I just try to remember there are others born into life with much tougher fights that started at a much earlier age. It doesn't make my fight any easier or belittle what I am going thru, and I would still voice the need for more research. It just helps me with my own journey, as I need to draw strength.

            I may be one of the people you feel spread the wrong message by trying to stay positive and grateful for little things in life and telling others that no one has any guarantees in life. But I never say it isn't bad, just that there are others with worse fights. I will try to remain more conscious though, to make sure I do not spread any message that conveys MS is ok. I never thought that could be how it is interpreted.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #21
              Originally posted by Mamabug View Post
              That is your truth, drmarc. My truth is that, although I do not, and never will, like MS, I have, absolutely, adjusted to it. And, MS is something that I can live with, and am living with.

              We all have our own truth. I am glad that you do not get to decide what my truth is. If you did, my life would be less grateful, less happy, less content. I hope that, some day soon, your truth will change and you will begin to adjust to, accept, and live with your MS in a more contented way. You deserve that.
              Truth like MS is subject to change. Early on contentment and gratitude was present, but when you begin to progress, as you will, and someone has to change you and clean you because you cannot move your arms or have the dexterity in your hands to carry out a basic human dignified behavior like wiping your backside, then share with the rest of the community how you stay happy, content, and grateful.

              Maybe if less people with MS and those who love them "...adjusted to, accepted, and ....lived in a more contented way" a bit less we would have a cure or at least real treatment options. I thank my higher power every day that I did not just "....adjust to, accept, and be contented..." with the discrimination and prejudice that exists in our society against disabled people and fought back every chance I had.

              You are doing just what people want us to do, just stay quiet, don't make any noise, and accept it. Because to put it out there makes other too uncomfortable and guilty and "Lord knows" we don't want that.

              I am not a sheep nor will I be a "good little boy and just accept" this horrific disease.

              Denial is a powerful defense mechanism. Unfortunately, I am too smart to be someone who lives in denial.

              The advances in medicine in HIV Treatment, Cancer Treatment, Diabetes Treatment, and other mainstream diseases is directly due to individuals not "...being grateful, content, and accepting."

              This is not meant to be personal, just a much needed conversation.
              Last edited by Kimba22; 04-11-2015, 06:41 PM. Reason: language/ guideline #4

              Comment


                #22
                Originally posted by pennstater View Post
                drmarc - I do have to agree that if MS was contagious, much more would be spent on finding a vaccine and/or a cure. Thankfully though, it is not. I would hate to pass it along. I am also sorry for the course your progression has been on and the fears you face each day.

                But I disagree that DMDs are useless. Initially, my remissions were long, for which I am grateful. They then started to come more frequently, bringing new symptoms, worsening old, and leaving some damage after they left. Each DMD worked for a while, then cycle would start again. But it slowed. Now with Tysabri, slowed again for 2.5 years. I will take that anyday.

                MS or not, it never ends well. We all wind up in the same place some day. Since I am not in the same place with the disease course that you are, I can respect how you feel. But I hope that if/when I do wind up with severe progression, I can adapt, as I can't live angry every day, or I won't live at all.

                I would never tell someone MS isn't bad, I just try to remember there are others born into life with much tougher fights that started at a much earlier age. It doesn't make my fight any easier or belittle what I am going thru, and I would still voice the need for more research. It just helps me with my own journey, as I need to draw strength.

                I may be one of the people you feel spread the wrong message by trying to stay positive and grateful for little things in life and telling others that no one has any guarantees in life. But I never say it isn't bad, just that there are others with worse fights. I will try to remain more conscious though, to make sure I do not spread any message that conveys MS is ok. I never thought that could be how it is interpreted.
                Please do not misunderstand me, anger is just the emotion that I have with MS and my husband "...of 30 years" who has SPMS. When I talk to others, friends and family, co-workers, the impression they have is that you can just sit in a scooter and all is well. They do not see the daily 10/10 pain he lives with from neuropathic pain, or the times he cannot get to a bathroom and at 52 is mortified when he has an accident, or the bruises from repeated falls, or needing to be fed because his hands can't hold the fork steady enough to eat.

                Had my husband been on DMD drugs 30 years ago everyone would have hailed them as effective for the 20 years he was in remission, but sadly this is the course of MS so do the drugs really work? His doctor said the proof is in people not being in the hospital for weeks or months, but that has nothing to do with drugs and all to do with managed care. Women used to give birth and be in for weeks now it is almost an outpatient procedure.

                I no we, want others to know how truly devastating this disease is to a person's life, a couples plans, hopes, dreams, future, and the emotional and physical demands that come with this disease. I won't even mention the financial cost.

                30 years ago he was diagnosed and there was no treatment for individuals with MS, not least of all those with SPMS or PPMS. 30 years of MS Walks, fund raisers, research etc. and still today 30 years later there is nothing to offer those with SPMS or PPMS. Why? In 25 years we have more treatment options for HIV than could ever be imagined to make it a manageable disease. Where is the treatment in 30 years, not one, for SPMS or PPMS? Why? Why?

                These issues need to be raised by the MS Society and other organizations that continually take money but produce no real options for people like us!!!

                Comment


                  #23
                  Hey Dexter,

                  It's not up to your parents what you decide to do. Call a cab and go. And try to cultivate a friend at school or yoga so you have a life outside of family. Do you have a Woman's Center in your town?call them and ask about low cost counseling services so you have a place to talk, outside of family.

                  Good wishes to you-- it's YOUR life, not your parents life. I am sure they do it from love and concern, but you gotta change this dance you're doing with them. I am a senior citizen and a mom, and know this from all perspectives!

                  Comment


                    #24
                    DrMarc, you make me feel better

                    I always feel "validated" when I read one of DrMarc's posts.

                    DrMarc, you are honest, you obviously dearly love your partner, and you know exactly what you are talking about.

                    How do I know DrMarc is right? Because after years of relatively happy-clappy RRMS, I am well and truly SPMS.

                    We all like to hear about the 70 year-old with nary a limp, but that's not generally the way this thing rolls.

                    And once you are diagnosed, your life is irreparably changed. The life you had planned is gone forever.

                    I can see why places like this want to give the newly-diagnosed hope. There probably is hope, and for most of us there are many tolerable years ahead. But like the swinging scythe, or the raven's knock...

                    For me - honestly, I can't see the light of the end of the proverbial, because every time it turns out to be the oncoming freight train.
                    Every "new" MS drug seems to be another roll of the dice for a drug designed for something else. No actual progress on what causes this or makes it worse.

                    Also absolutely agree DrMarc, for most of us the day will come. When I was diagnosed 18 years ago, I read every internet post I could find (it was the World Wide Web back then) and people where discussing exactly what we are discussing now.
                    I read those posts, and I knew what was likely to happen, but I closed my eyes and ignored it, in the vain hope it would all away.

                    Diagnosing neurologist told me, while I sobbed on a hospital bed, wondering how I was going to tell my parents, that there would be a cure in the next five years. Yeah, right. (Still makes me cry just thinking about it.)

                    Maybe if we all complained louder and longer earlier and stopped trying to accept it, someone might listen.

                    And why is every MS Society fundraiser I see is some sort of walk or bike ride? (Neither of which I can do anymore, thanks to MS.)

                    Where is our Ice Bucket Challenge?

                    All my best to you and your partner, DrMarc, and thank you for posting.

                    Comment


                      #25
                      Originally posted by drmarc View Post
                      Truth like MS is subject to change. Early on contentment and gratitude was present, but when you begin to progress, as you will, and someone has to change you and clean you because you cannot move your arms or have the dexterity in your hands to carry out a basic human dignified behavior like wiping your backside, then share with the rest of the community how you stay happy, content, and grateful.
                      ...

                      I am not a sheep nor will I be a "good little boy and just accept" this horrific disease.

                      Denial is a powerful defense mechanism. Unfortunately, I am too smart to be someone who lives in denial.

                      The advances in medicine in HIV Treatment, Cancer Treatment, Diabetes Treatment, and other mainstream diseases is directly due to individuals not "...being grateful, content, and accepting."

                      This is not meant to be personal, just a much needed conversation.
                      I get it, that you and I have different perspectives. That doesn't make me right and you wrong. It just makes us different.

                      When, and if, my disease progresses to the point of requiring much personal care, I hope, and expect that I will remain as content as I currently am in the same manner that I currently do. By being grateful for the things I have to be grateful for, by looking for (and finding) blessings mixed in with my losses, and by leaning on God.

                      I am a sheep. One of God's sheep. And I have a Shepherd. I don't view accepting this disease as "just" accepting, but as an acceptance I've pursued and chosen to cultivate. I don't believe that I am in denial. I have MS. I don't like it. My MS does, and will continue to, progress. And, I accept it. Choosing not to accept my disease would be denial. Not accepting my MS will not make it go away.

                      The advances in disease treatment are due to research and science. If I choose not to accept my disease or be grateful for my blessings, or be content with life, it would make no difference in advancing treatment. And, accepting my MS does not mean I wish research to stop. I am grateful for those who spend their careers pursuing MS research in disease treatment. Perhaps, that is one "grateful" thing that you and I can agree on.

                      I continue to hope that, some day soon, your truth will change and you will begin to adjust to and accept your MS, and live your life in a more grateful and contented way. Perhaps you will also be able to move out of your denial. I still believe that you deserve that.
                      ~ 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


                        #26
                        I am sorry to seem to be an 'angry young man'. I feel much the same as drmarc. I don't believe that sitting around waiting for the 'end' to arrive is something I can come to terms with. This MS community is too complacent to find an effective treatment/cure. This is my second response to this thread and this conversation has pointed out , to me, the complacency of our community. I have to agree with drmarc's views, in large part, because MS is a 'home wrecker', a personality stealer and a dignity stealer, to name just a few of the high points. After being 'described' by Charcot about 200 years ago, when is this going to end? I have MS and it DOES have me! Thanks drmarc. I hear you loud and clear!

                        Comment


                          #27
                          Better to die on your feet than to live on your knees. Which obviously is a tad ironic because quite few of we MS victims are past the point of standing.

                          Comment


                            #28
                            From the original post:
                            Originally posted by DexterMorgan View Post
                            ...

                            How do you guys deal with MS and trying to not take over your life?
                            We've probably scared DexterMorgan away. lol

                            But, perhaps, this is what she needed to hear. That we all deal with MS differently. Because we are all different people. And, Dex, you'll need to find your own way, too, just as each of us have, and your own perspective, and deal with it in your way.

                            My way is right for me, and the way of drmarc and JerryD is likely more right for them than my way would be.

                            I don't live in a black and white world. There is not one way that is right for everyone, and, sometimes, I need to remind myself of that. My world, as I see it, is more plaid and paisley and polka-dot. Our differences are not stark and they are not necessarily right or wrong. They are simply different.
                            ~ 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


                              #29
                              Sorry Mamabug and Dexter,
                              I can be blunt, many times I am. I can't see anything but misery when it comes to a life with MS. i wish that I could see the 'glass half full' but its full of crap! My way of thinking isn't the 'best' way, it's MY way and I wish that I could change it. So having MS has been a trial by fire for me. MS sucks and that is it for me.

                              Comment


                                #30
                                Dexter - I was wondering if you started the yoga classes you were excited about. If so, how did you make out? Staying as active as your body and mind will allow you is one way to help keep MS from taking over mentally. At least it helps me.

                                I hope you were able to get to yoga!
                                Kathy
                                DX 01/06, currently on Tysabri

                                Comment

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