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    Non progressive MS?

    I met a lady in the pharmacy yesterday who was wearing a MS Walk shirt. So we struck up a conversation. She told me her MS was "non progressive". I've never heard of that. I wonder if she meant she never had a relapse or her symptoms were mild and didn't seem to progress. She is taking one of the newer MS pills. But she said she has had MS for 26 years. She looked pretty young so I guess she was dx as a child.

    Anyone ever heard of this?
    Marti




    The only cure for insomnia is to get more sleep.

    #2
    Maybe she meant that she has RRMS and it hasn't progressed?

    Comment


      #3
      Hi marti,

      Kimba put a sticky up with new classifications on the types of MS. I suspect the terminology the lady used is based on that.

      http://www.msworld.org/forum/showthr...rint-materials
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        I was thinking the same thing. I looked online and saw this abstract about a research from Sweden: https://www.mstrust.org.uk/research/...rs-after-onset

        I think our SNOOPY fits into this category from I've read. ?

        I also have two close friends who have had only 2 episodes about 25 or so years ago and both show no signs of progression nor any more relapses. Lucky them!
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

        Comment


          #5
          It obviously exists. Wish I had that variety.

          I'd swap all the flares in the world for not so much "progression".

          Hello, drug companies - maybe you're concentrating on the wrong thing. Flares and progression may not necessarily correlate.

          You can survive a flare, but this progression sucks big time.

          Flares are no good. Still, it's the flu compared to polio.

          Comment


            #6
            Originally posted by Thinkimjob View Post
            It obviously exists. Wish I had that variety.

            I'd swap all the flares in the world for not so much "progression".

            Hello, drug companies - maybe you're concentrating on the wrong thing. Flares and progression may not necessarily correlate.

            You can survive a flare, but this progression sucks big time.

            Flares are no good. Still, it's the flu compared to polio.
            BRILLIANT thought! I suspect Pharma has already looked/is looking into that as they could still make a mega money.

            Marti, I wonder if that woman was referring to Primary Progressive.
            Peace to all,
            LM
            RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

            Comment


              #7
              Originally posted by Fishytrout View Post
              BRILLIANT thought! I suspect Pharma has already looked/is looking into that as they could still make a mega money.

              Marti, I wonder if that woman was referring to Primary Progressive.


              I don't think so. She was in super good condition.
              Marti




              The only cure for insomnia is to get more sleep.

              Comment


                #8
                Two things come to mind:

                1. She is one of the very rare people who has a non progressive form and is that actually even MS?

                2. She was misdiagnosed 25 years ago. I don't think that is out of the question. I have a distant family member who was diagnosed with a brain tumor 30 years ago, went to Mexico for a coffee enema or some such tripe and was cured. Really? Yeah I'm not feeling that she actually had a brain tumor to begin with but just my humble opinion.
                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


                  #9
                  I think this is where I fit in.

                  Although no one ever told me that. I was diagnosed late (2010 at 57), and my symptoms were not as severe as most, just different. My balance was affected, and I had mild neuropathy in my legs. The main symptoms for me, were mostly in my executive mental functions. Where I used to be exceptionally intelligent, and capable of working rings around everyone else, I noticed my thinking was slower, and I suddenly didn't deal with interruptions. After an interruption (telephone call, conversation with co-worker), I couldn't get back to what I was distracted from. More than once I would start the project over, forgetting I had already started it. I also couldn't coherently explain to someone else how to do a task. It was really weird.

                  I thought it was dementia, so I was relieved, at first, when I found out I had MS. Until I went from working full time to disabled in less than 4 years. Once I quit work, the deterioration seemed to slow, then stopped, and I seemed to recover some.

                  I've actually not seen a neuro for a couple of years since I was told I would probably not progress further, or if I did, it would be slowly, and would likely not disable me any more than I already was. And that has seemed to be true, as I'm about the same as I was 4 years ago.

                  Is it enviable? Perhaps. I would have rather dealt with more physical symptoms, though, and kept working a few more years, but we rarely get what we ask for! It can create problems, though, in that I don't SEEM handicapped; yet I get fatigued more easily than most and I don't tolerate heat AT ALL compared to previously. And I live in FL (go figure). I also tend to "drunk walk" (some days worse than others) and have occasional bouts of diplopia. But all in all, I can't complain, as it could be so much worse.

                  Comment


                    #10
                    Originally posted by jcrain9663 View Post
                    Although no one ever told me that. I was diagnosed late (2010 at 57), and my symptoms were not as severe as most, just different. My balance was affected, and I had mild neuropathy in my legs. The main symptoms for me, were mostly in my executive mental functions. Where I used to be exceptionally intelligent, and capable of working rings around everyone else, I noticed my thinking was slower, and I suddenly didn't deal with interruptions. After an interruption (telephone call, conversation with co-worker), I couldn't get back to what I was distracted from. More than once I would start the project over, forgetting I had already started it. I also couldn't coherently explain to someone else how to do a task. It was really weird.

                    I thought it was dementia, so I was relieved, at first, when I found out I had MS. Until I went from working full time to disabled in less than 4 years. Once I quit work, the deterioration seemed to slow, then stopped, and I seemed to recover some.

                    I've actually not seen a neuro for a couple of years since I was told I would probably not progress further, or if I did, it would be slowly, and would likely not disable me any more than I already was. And that has seemed to be true, as I'm about the same as I was 4 years ago.

                    Is it enviable? Perhaps. I would have rather dealt with more physical symptoms, though, and kept working a few more years, but we rarely get what we ask for! It can create problems, though, in that I don't SEEM handicapped; yet I get fatigued more easily than most and I don't tolerate heat AT ALL compared to previously. And I live in FL (go figure). I also tend to "drunk walk" (some days worse than others) and have occasional bouts of diplopia. But all in all, I can't complain, as it could be so much worse.


                    I have always said that it is harder to deal with mental problems than the physical. Hoping for the best to you. Keep us informed.
                    Marti




                    The only cure for insomnia is to get more sleep.

                    Comment


                      #11
                      Yep Jcrain and Marti,
                      Might not remember if i ate breakfast, took pills or paid a bill and struggle to have a conversation and feel like I could sleep my life away, but HEY I look good!

                      Comment


                        #12
                        Originally posted by Carolinemf View Post
                        Yep Jcrain and Marti,
                        Might not remember if i ate breakfast, took pills or paid a bill and struggle to have a conversation and feel like I could sleep my life away, but HEY I look good!
                        Yes, this is me! You reminded me that this still happens. I will think I paid a bill because I MEANT to, or I will log into my bank to pay it, then log out without paying it. So, I guess it still affects me, but since I don't have a job, I don't have to worry about it.

                        Jo

                        Comment


                          #13
                          Originally posted by Seasha View Post
                          I think our SNOOPY fits into this category from I've read. ?
                          I don't really know Seasha. I have progressed some through the years and I am SP. The way I initially presented with MS I could have and maybe should have been much worse than I am. MRIs and Neurological exams have remained stable for quite some years now. I would definitely be happy if I didn't progress any further but only time will tell.
                          Diagnosed 1984
                          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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