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    PPMS from the start

    Hi Everyone,

    I've been here (MSW) about 10 years. Learned a lot regarding MS, how it varies, it's similarities, how it can "remiss," and of course, progress. So my friends, the question I have regards progression.

    I am considered PPMS. Different from many members here, in that everyone seems to progress... first; RR then SP then to where I am (PP).

    Is there anyone else like me? NEVER a remission, just a steady slow relapse... my best description, sorry.

    Jer

    PS, Personally am glad not to have faced the RR rollercoaster described in these many threads.

    #2
    Iíve never had a real recognizable relapse. I had vertigo for a couple of weeks, and a numb patch for a month. I started with foot drop on my left side 15 years ago, at the age of 53, and have slowly progressed to a power wheelchair. Itís affecting my arms and hands now.

    My neurologist has classified me as RRMS, then SPMS, now PPMS, to qualify for DMDís. He says itís all the same disease, just different stages.

    Comment


      #3
      Originally posted by 502E79 View Post
      Hi Everyone,

      I've been here (MSW) about 10 years. Learned a lot regarding MS, how it varies, it's similarities, how it can "remiss," and of course, progress. So my friends, the question I have regards progression.

      I am considered PPMS. Different from many members here, in that everyone seems to progress... first; RR then SP then to where I am (PP).

      Is there anyone else like me? NEVER a remission, just a steady slow relapse... my best description, sorry.

      Jer

      PS, Personally am glad not to have faced the RR rollercoaster described in these many threads.
      Jer ~

      I was dx'd 20 years ago with PPMS.

      I fit into the older, original definition of PPMS, which describes a slow steady progression from the onset, without relapses or remissions, and with possible plateau periods and temporary minor improvements.

      The new definition of PPMS now includes what used to be called Progressive Relapsing, and which was a separate course before the changes. They may have done this for easier accessibility to DMT's, since they used to be prescribed only for those with relapses.

      In any case, my earliest symptoms were right arm weakness at work after repetitive motions, dexterity problems with right hand fingers, right leg dragging/limping after lengthy walking, difficulty lifting my leg into the car at times, physical weakness after hot shower or after getting overheated, bladder urgency, and Lhermittes sign.

      After several months of these symptoms occurring more frequently, I went to the doctor, then neuro, then testing, then dx, then Cleveland Clinic Mellen Center for confirmation of PPMS. They told me that I was easy to diagnose.

      I have had seemingly stable periods over the years, where things felt the same for 6 months or so at a time.

      And I have also enjoyed temporary minor improvements, at times.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Hi kmallory1,

        Very much the same as to the beginnings with right side foot drop around 50 yo. I ignored it.

        I'm still ambulatory with the latest sx, minor vertigo. AND My neuro did the same route yours took... for the same reason I guess. They really know so little and so much wish to label / box what they think they do know.

        KoKo,

        Yeah. The DMT's can be the only reason for the one-step-at-a-time route now taken in a dx. I would not enjoy having been told PPMS at dx. It had to have been tough hearing that! Any MS dx is horrible but throw Primary Progressive in front... yikes!

        You're upbeat (you too KM), in both attitude and every post. And face a few things I may come to know over time (avoiding hot shower, overheating & bladder urgency problems). Let's keep positive together!

        All in all and I hesitate to say so but there are times when a "plateau" period seems very much like temporary minor improvement... or maybe it is! That's another thread.

        I thank you both, feeling less alone in my small corner of MS hell.

        Jer

        Comment


          #5
          Originally posted by 502E79 View Post
          Let's keep positive together!
          Sounds like a good plan!

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Iíve found that a great resource for information about primary progressive MS is in the publications of the Rocky Mountain MS Center, particularly interviews and articles with Dr. Timothy Vollmer. He is easy to understand and addresses the progressive aspect of MS more than other sources.

            If you go to the web site, Mscenter.org, look under Education, then Publications, youíll see InforMS. Click on the archive to get to the Winter 2016 magazine. The interview with Dr. Vollmer is on page 5.

            Thereís another excellent article in the Fall 2015 issue about relapsing and progressive MS.

            I have found the InforMS magazine to be far more relevant than the NMSS Momentum publication.

            Comment


              #7
              kmallory1,

              I'll get to it! Maybe the powers that be have some numbers on the amount of actual MS dx that honestly began as PPMS, and at what approximate age (gender?).

              Actually,I feel this info doesn't exist. BUT if it did, research may actually be directed toward hitting the target, MS progression, and not adversely affected by the hide-and-seek behavior of RRMS.

              It's only my uneducated theory but PPMS is more stable, less of a moving target. Seems that research at this end of the quandary would be more applicable across the board....

              Thinking out loud. Thanks for the info!

              Jer

              Comment


                #8
                kmallory1,

                Read the articles. Will need to reread, there are times that I read or see what I want to... and not what is actually there.

                That said... I felt some positivity when the article spoke of a theory that an initial PP dx (Not having gone through the inflammatory RRMS) that, added to the slower pace of a PPMS disease course,.... may "buy some time." I'll take it!

                My thoughts only of course! But regardless the article gave a better, more current understanding of PPMS.

                Thanks very much,

                Jer

                Comment


                  #9
                  I know what you mean about needing to re-read the articles. Iíve tried to summarize them a couple of times and find it difficult.

                  Neurologists are still looking for lesions and not considering atrophy. Iím kind of ambivalent about DMTís now. Iím taking Ocrevus but donít put much faith in it. It lets me feel like Iím fighting this, anyway.

                  Comment


                    #10
                    Just found this thread. Dx in 2005 PPMS. Troubles and symptoms going on ten years before that. Slow steady decline just a little faster than the aging process itself. I canít comment on anything RR because I just canít relate. A total different coarse. The only thing I really never understood was reading about people hardly being able to walk and then getting better. My symptoms never improved ever. Just slowly came on and stayed. Strange when you think about it.
                    I was never offered anything until Ocrevus and took it four months ago. Just because, really not expecting too much , but deep down hoping for some kind of miracle. Maybe it may have slowed things. Weíll see I guess. I think weíre only in the maybe 10% of all people with MS. That are like us. Might even be a lower %. Doing all right over all but slowly coming to grips that when I wake up tomorrow I wonít be any better. Crazy but I still ride motorcycles. Got lots of cordination stuff going on that doesnít help , but I found I rode as I progressed so by staying with it Iíve adapted somewhat. By staying with everything Iíve adapted. Things that were mastered and routine had to adapt and learn to do differently. More than one way to skin a cat. ( just an expression). Good luck.
                    It was one agains't 2.5million toughest one we ever fought.

                    Comment


                      #11
                      Originally posted by oceanpride View Post
                      Just found this thread. Dx in 2005 PPMS. Troubles and symptoms going on ten years before that. Slow steady decline just a little faster than the aging process itself. I canít comment on anything RR because I just canít relate. A total different coarse. The only thing I really never understood was reading about people hardly being able to walk and then getting better. My symptoms never improved ever. Just slowly came on and stayed. Strange when you think about it.
                      I was never offered anything until Ocrevus and took it four months ago. Just because, really not expecting too much , but deep down hoping for some kind of miracle. Maybe it may have slowed things. Weíll see I guess. I think weíre only in the maybe 10% of all people with MS. That are like us. Might even be a lower %. Doing all right over all but slowly coming to grips that when I wake up tomorrow I wonít be any better. Crazy but I still ride motorcycles. Got lots of cordination stuff going on that doesnít help , but I found I rode as I progressed so by staying with it Iíve adapted somewhat. By staying with everything Iíve adapted. Things that were mastered and routine had to adapt and learn to do differently. More than one way to skin a cat. ( just an expression). Good luck.
                      oceanpride ~

                      Originally posted by oceanpride View Post
                      The only thing I really never understood was reading about people hardly being able to walk and then getting better.
                      Sometimes physical therapy and stretching exercises, and daily walking routines, can maximize walking abilities. The disease isn't really "getting better", but the ability to walk has become the best it can be, at that time.

                      Originally posted by oceanpride View Post
                      By staying with everything Iíve adapted. Things that were mastered and routine had to adapt and learn to do differently. More than one way to skin a cat. ( just an expression).
                      I can relate. Well said, oceanpride.

                      Take Care
                      PPMS for 22 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment


                        #12
                        Originally posted by oceanpride View Post
                        The only thing I really never understood was reading about people hardly being able to walk and then getting better.
                        I should have added, that in the case of someone with RRMS, whose relapse has temporarily taken away their ability to walk, there can be a partial or complete remission/recovery after the relapse.

                        That is not the usual case for those of us with progression, unfortunately.

                        Maybe the Ocrevus will help with some improvement, or prevent more progression for you, oceanpride. Time will tell.

                        Take Care
                        PPMS for 22 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Thanks Oceanpride for more thoughts....

                          Agree that we all adapt, that OUR disease course is built on a constant decline.

                          We adapt as need be over time until the issue resolves somewhat. It slowly worsens (months, maybe a year or so in my case). Then yet again, we find a new way to walk (gate), to bend (balance), even coordination (vertigo), etc.

                          At least 20+ years and I'm still able to walk, differently as you stated. Right arm can still do certain things but dexterity severely impaired.

                          It is a different disease and makes for selective comments on the board. It's hard to say something helpful when you know nothing of a flair or relapse or steroids (yikes!). But it is also hard to be positive when there is no remission.

                          Is our end of the wishbone the short or the long side?

                          Let's all continue to adapt as best as we can.

                          Jer

                          Comment


                            #14
                            I can totally relate

                            When I was diagnosed in 2004, I think my days of RRMS (if in fact I ever was) were long behind me. In 1994, my left arm went numb for about three months. Never did I think, "oh this is RRMS"! I thought pinched nerve, stress, some muscular problem in the arm, etc. I did see different doctors and a chiropractor, had X-rays of the arm and shoulder, but nothing turned up, and before researching anything else, I suddenly felt OK (other than perhaps being too tired for a 30 year old, and some weird itching spells I doused with Gold Bond anti-itch cream!).

                            So when I was diagnosed at 40, I do think I had PPMS, but we went through the RRMS dog and pony show, but yes, I, too, have been feeling a steady stream of yuck since day one.

                            I sometimes wonder why I come to this board as my experience is so different form the majority of persons here. Many are struck so completely obviously by a sudden attack that they discover their RRMS in a hospital! Then they get Solumedral or go home and then remit (remit, what? huh?). The meds actually offer people with RRMS hope, and as for persons with PPMS, there are no relapse/remissions to count, so therefore how can you study it? What do you count? Then there is Ocrevus for PPMS, maybe, but not like m neurologist was jumping up and down about it.

                            So everyone thinks PPMS is the biggest bummer, but I am still mobile and I still drive. I know I waited for remissions like Linus waited for the Great Pumkin for a long time. No dice.
                            Tawanda
                            ___________________________________________
                            Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                            Comment


                              #15
                              Tawanda - I am grateful you come to the boards, along with other PPMS members.

                              The insights you provide, the adaptability you all show, and your genuine willingness to help those with RRMS, as well as those who transitioned to SPMS, make this a better board. I actually feel selfish at times, as I feel I can never really help with the progression posts, but yet, benefit so much from all of your wisdom.

                              So a big thank you to all who continue to post. Please stick around!
                              Kathy
                              DX 01/06, currently on Tysabri

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