Announcement

Collapse
No announcement yet.

Defining Progressive Relapsing MS

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Defining Progressive Relapsing MS

    It's nice that MSW has started a subforum for progressive relapsing MS because it provides an opportunity to define the rarest form of MS.

    In simplest terms, progressive relapsing is like primary progressive -- steadily progressive from the beginning without remission -- that also has relapses. There may or may not be some level of recovery from the relapses, but there is no remission from the initial onset and progression.

    Progressive relapsing is not secondary progressive that still has relapses.

    Secondary progressive is a later phase of relapsing-remitting MS, which has recovery and remission from attacks in the early stages. Because relapsing-remitting, by definition, has remissions, relapsing-remitting does not turn into progressive relapsing (no remissions) by way of secondary progressive.

    Secondary progressive and progressive relapsing are not two late stages of relapsing remitting. Put another way, the progression that occurs after relapsing remitting is NOT called secondary progressive if relapses have stopped and progressive relapsing if relapses still occur.

    They are different forms of MS whose paths do not cross. Secondary progressive is late relapsing-remitting MS. Progressive relapsing is more of an alternate presentation of primary progressive MS.

    Primary relapsing = never has remissions even with relapses
    Secondary progressive = has remissions in early phase as relapsing remitting even though remissions may stop later as RRMS turns progressive

    #2
    Originally posted by jreagan70 View Post
    It's nice that MSW has started a subforum for progressive relapsing MS because it provides an opportunity to define the rarest form of MS.

    In simplest terms, progressive relapsing is like primary progressive -- steadily progressive from the beginning without remission -- that also has relapses. There may or may not be some level of recovery from the relapses, but there is no remission from the initial onset and progression.

    Progressive relapsing is not secondary progressive that still has relapses.

    Secondary progressive is a later phase of relapsing-remitting MS, which has recovery and remission from attacks in the early stages. Because relapsing-remitting, by definition, has remissions, relapsing-remitting does not turn into progressive relapsing (no remissions) by way of secondary progressive.

    Secondary progressive and progressive relapsing are not two late stages of relapsing remitting. Put another way, the progression that occurs after relapsing remitting is NOT called secondary progressive if relapses have stopped and progressive relapsing if relapses still occur.

    They are different forms of MS whose paths do not cross. Secondary progressive is late relapsing-remitting MS. Progressive relapsing is more of an alternate presentation of primary progressive MS.

    Primary relapsing = never has remissions even with relapses
    Secondary progressive = has remissions in early phase as relapsing remitting even though remissions may stop later as RRMS turns progressive
    Okay, I sit corrected.

    Comment


      #3
      Lol.. sit not stand ! Very clever ! Lol

      Comment


        #4
        sorry, but all I got out of the above several posts was the excellent joke about sitting corrected. Kudos for that one! Think I'll stay away for a while until I can figure out where I belong in this suddenly confusing forum.

        Comment


          #5
          Originally posted by jreagan70 View Post
          It's nice that MSW has started a subforum for progressive relapsing MS because it provides an opportunity to define the rarest form of MS.

          In simplest terms, progressive relapsing is like primary progressive -- steadily progressive from the beginning without remission -- that also has relapses. There may or may not be some level of recovery from the relapses, but there is no remission from the initial onset and progression.

          Progressive relapsing is not secondary progressive that still has relapses.

          Secondary progressive is a later phase of relapsing-remitting MS, which has recovery and remission from attacks in the early stages. Because relapsing-remitting, by definition, has remissions, relapsing-remitting does not turn into progressive relapsing (no remissions) by way of secondary progressive.

          Secondary progressive and progressive relapsing are not two late stages of relapsing remitting. Put another way, the progression that occurs after relapsing remitting is NOT called secondary progressive if relapses have stopped and progressive relapsing if relapses still occur.

          They are different forms of MS whose paths do not cross. Secondary progressive is late relapsing-remitting MS. Progressive relapsing is more of an alternate presentation of primary progressive MS.

          Primary relapsing = never has remissions even with relapses
          Secondary progressive = has remissions in early phase as relapsing remitting even though remissions may stop later as RRMS turns progressive

          Sorry, but aside from Think's excellent quip... The funniest line was, wait for it.... "In simplest terms..." After that even 4 readings did not help, but thanks anyway jreagan70

          Comment


            #6
            Fourtimer -- Looks like you found our new location for Progressive MS. Sorry we confused you with the change.

            http://www.msworld.org/forum/showthr...oving-postings Here was our response to your previous thread.

            Please let us know if you're still have trouble. Sounds like you're finding some things confusing. You can post about Primary Progressive MS here: http://www.msworld.org/forum/forumdi...Progressive-MS
            ~ 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


              #7
              This is pretty simple:

              Progressive relapsing MS is primary progressive MS that also has relapses.

              Personally, I think that since all MS is progressive, any form that has relapses is progressive relapsing. But I'm not the person who named this thing.

              Comment


                #8
                Good morning, don't worry I'm not confused, I found this whole topic interesting.

                Has anybody seen the TV ad for a drug to help relapsing progressive MS? It's a pretty good ad, although I won't comment about what I think of the drug.

                I just thought it was funny after this discussion to see the ad.

                Comment


                  #9
                  I get it...

                  MS is progressive. The way in which we define the slope of the progression determines the label of "SP, PR or PPMS". I have progressive relapsing... it means all symptoms continue, little by little to worsen... I think of it as the tide going out, and all the boats in the harbor lower in the water. Its gradual.
                  My experience has been that the acuteness of a particular symptom can come and go. After months without "Frankenstein foot", I am feeling its onset. It starts with a general ache in my right foot, where I am increasingly aware of its presence. Within a few days, or weeks, it will degenerate to completely numbness, or acute, sharp pain. The numbness has lasted for over a year. The sharp pain lasted several months.
                  I have the same response to either: keep doing what I am doing. I continue to run, I'm just extra careful of where I place my right foot, because it may not clear the ground without a concentrated effort. And I don't medicate for the pain - I hate gabapentin.
                  Because I understand this is a progressive disease, my focus is to lessen the slope of the decline, in anyway possible.
                  I am grateful that research has revealed the different "patterns" of MS. It allows for more effective treatment, targeted for that pattern of MS. I started out on Copaxone, which did not slow down the progression, so I moved to Tysabri two years ago. It made a major difference.
                  The tide still goes out, the boats still lower in the harbor. And I do a body scan every morning to check where the disease may be getting traction.
                  This has been my experience with PRMS.
                  Diagnosed 2011, with sudden and acute onset at 48.

                  Comment


                    #10
                    Ok, thoroughly confused

                    Originally posted by jreagan70 View Post
                    It's nice that MSW has started a subforum for progressive relapsing MS because it provides an opportunity to define the rarest form of MS.

                    In simplest terms, progressive relapsing is like primary progressive -- steadily progressive from the beginning without remission -- that also has relapses. There may or may not be some level of recovery from the relapses, but there is no remission from the initial onset and progression.

                    Progressive relapsing is not secondary progressive that still has relapses.

                    Secondary progressive is a later phase of relapsing-remitting MS, which has recovery and remission from attacks in the early stages. Because relapsing-remitting, by definition, has remissions, relapsing-remitting does not turn into progressive relapsing (no remissions) by way of secondary progressive.

                    Secondary progressive and progressive relapsing are not two late stages of relapsing remitting. Put another way, the progression that occurs after relapsing remitting is NOT called secondary progressive if relapses have stopped and progressive relapsing if relapses still occur.

                    They are different forms of MS whose paths do not cross. Secondary progressive is late relapsing-remitting MS. Progressive relapsing is more of an alternate presentation of primary progressive MS.

                    Primary relapsing = never has remissions even with relapses
                    Secondary progressive = has remissions in early phase as relapsing remitting even though remissions may stop later as RRMS turns progressive
                    Does progressive mean that same symptoms gets worse, or that the same lesion gets bigger?

                    And isn't a relapse when an old symptom comes back after getting better?
                    So relapsing remitting is not progression, right? So what defines a relapse?

                    This is when I think I definitely have cognitive dysfunction !
                    10/2005 AFP/ MS?later:TN
                    later:ADEM/MS,
                    5/08 MS IVSM, Copaxone

                    Comment


                      #11
                      I am not an expert on progressive MS. I am a sufferer of the Primary Progressive form of MS.
                      I believe that Primary Progressive MS causes the affected person to decline quickly, deficits appear more quickly than in the other forms. In my experience, I was walking with a cane, with difficulty, six months ago. Then, I began to have much more difficulty walking and I started using a 'rollator'. Now I have much more difficulty standing for more than a few minutes. I am weaker than I have ever been in my life. I have very little balance and that seems to be failing. Declining more every day. So, yes. Progressive means that the same symptoms get worse. Primary progressive disease doesn't ,typically, include relapses.
                      And I have also seen the TV commercial for Tecfidera! I HATE it. It makes MS seem like it is a fun disease. They should be ashamed of the way they have portrayed MS. I think that the company and their ad agency owe the MS community an apology for making 'light' of this miserable disease !

                      Comment


                        #12
                        Originally posted by dawlfin View Post
                        Does progressive mean that same symptoms gets worse, or that the same lesion gets bigger?

                        And isn't a relapse when an old symptom comes back after getting better?
                        So relapsing remitting is not progression, right? So what defines a relapse?

                        This is when I think I definitely have cognitive dysfunction !
                        Hi Dawlfin

                        This explanation from the National MS Society about the four types (courses) of MS is fairly straightforward:

                        http://www.nationalmssociety.org/What-is-MS/Types-of-MS

                        Hope this helps.

                        Take care
                        PPMS for 26 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Jerry

                          Originally posted by JerryD View Post
                          And I have also seen the TV commercial for Tecfidera! I HATE it. It makes MS seem like it is a fun disease. They should be ashamed of the way they have portrayed MS. I think that the company and their ad agency owe the MS community an apology for making 'light' of this miserable disease !
                          Jerry,
                          I totally agree with you! The ad just really irritates me. It is like..

                          So yes, I have MS, but if I take this one pill, I can walk, and run, and never be tired! I can live the dream! Isn't it amazing!

                          They should be ashamed!Several well meaning people have asked me if I know about this ad or why don't I get the drug, because it will cure me. And that irritates me to no end! So many times I want to say, "Seriously? Do ya think if there was a drug or anything out there that cured this god forsaken disease, I wouldn't be taking it???" Get real!

                          But I don't. Sometimes I just smile and "yes, I've seen it and thanks for your concern. By the way, how was your trip to" ... and change the subject.

                          Other times I try to explain what the drug can and can not do. That usually is enough to bore them to death, and they end the conversation on their own.

                          Gotta love the MS life!

                          Sorry for the rant and sarcasm, it's been a rough week and I have lost my rose colored glasses and my glass-half-full attitude. And with MS cog fog, I can't remember where I put them! Maybe tomorrow I will find them.
                          Echo
                          DX 2007 Started Ocrevus on 2/14/2018

                          "Some where over the rainbow...."

                          Comment


                            #14
                            Thanks Echo! Gotta love it, yeah that's it ! You see it ! It's lying right there on the sidewalk under your heel ! Take this pill, twice a day . Everything w!ill be fine ! So say the ad men. It's more like 'Ha Ha ! You're out of luck!' 'What's wrong with you ? The lady on the commercial is living a wonderfully contented life !' Yep! that's just me, 'JerryD'. Lazy, stupid, malcontent ! Good luck

                            Comment


                              #15
                              Originally posted by JerryD View Post
                              I am not an expert on progressive MS. I am a sufferer of the Primary Progressive form of MS.
                              I believe that Primary Progressive MS causes the affected person to decline quickly, deficits appear more quickly than in the other forms. In my experience, I was walking with a cane, with difficulty, six months ago. Then, I began to have much more difficulty walking and I started using a 'rollator'. Now I have much more difficulty standing for more than a few minutes. I am weaker than I have ever been in my life. I have very little balance and that seems to be failing. Declining more every day. So, yes. Progressive means that the same symptoms get worse. Primary progressive disease doesn't ,typically, include relapses.
                              And I have also seen the TV commercial for Tecfidera! I HATE it. It makes MS seem like it is a fun disease. They should be ashamed of the way they have portrayed MS. I think that the company and their ad agency owe the MS community an apology for making 'light' of this miserable disease !
                              Sorry Jerry . I can't imagine what you are going through.
                              -Dawl
                              10/2005 AFP/ MS?later:TN
                              later:ADEM/MS,
                              5/08 MS IVSM, Copaxone

                              Comment

                              Working...
                              X