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    Secondary-Progressive Multiple Sclerosis (SPMS) ... Anybody?

    Hi,

    I am looking for others that have also been diagnosed with SPMS? I've looked around in here; so far, no luck. Anybody?

    I have questions pertaining to the difference(s), comparably, about what I am experiencing now and what I was experiencing in 2003, when I was initially diagnosed with RRMS and that diagnosis got retracted.

    Also, I'm hoping the clock can be "somewhat turned back" now that I'm being treated?

    All feedback is appreciated. Thank you!!

    ~ Cindy Lou Who


    DX'd on Wed., 02/04/2015, With Rare/Atypical SPMS
    MS Specialist/Neurologist, Verbatim: "Complicated & Intriguing"

    #2
    I'm secondary progressive now, after being diagnosed RRMS since 1989. The difference being steady decline in symptoms as opposed to rrms where there is an "attack" and the symptoms subside and/or completely go away.

    As for turning back the clock .... some have found DMT's their life saver and others not so much. I fall into the not so much category. lol Some have found diet and other "natural" ways to cope with the symptoms of MS.

    So .... with MS, it is vastly different from one person to the next. How's that for an answer?
    Karen

    Comment


      #3
      Hello CindyLWho and welcome to MSWorld.

      I'm hoping the clock can be "somewhat turned back" now that I'm being treated?
      Unfortunately, there is no turning back the clock There is no cure for MS and to date there has been nothing that will reverse the damage already done. The treatments for MS might
      keep more damage from happening, but there is no guarantees as these medications were initially meant to treat RRMS. Some who are SPMS still feel more comfortable staying on the Disease Modifying Drugs (DMDs) that not using anything. Some with SPMS feel there is no longer any reason to stay on the DMDs.

      In general, this is a personal choice. However, once a diagnosis of SPMS is made many Health Insurance carriers will not approve the DMDs.

      I am SP and there are many on MSWorld who are.

      Information about Secondary Progressive Multiple Sclerosis:

      https://my.clevelandclinic.org/ccf/m...ssive%20MS.pdf

      http://www.nationalmssociety.org/Wha...progressive-MS
      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 have SPMS and am on Tysabri. I believe it helps me stay active. Like SNOOPY said DMTs are a personal choice. Try them until you find one that works for you both timing wise and physically. They are not all created equally. Some have better efficacy than others. The shots tend to be on the lower end of the efficacy line coming in around 30% for preventing new lesions and new relapses, the same goes for Gilenya one of the new pills; Tecfidera and Aubagio have about a 50% efficacy at preventing new lesions and new exacerbations. Tysabri a once per month infusion has about an 80% efficacy at keeping away new lesions and relapses. It is also the most dangerous drug on the market so far.
        I am not sure about the efficacy of Lemtrada yet. They are also not sure if it carries a black box PML warning like Tysabri yet either.

        The best thing to do is to go through all of the medications with your doctor, read about them on this site (beware that most people post negative side effects than positive side effects).

        I wish you luck in finding a drug that works for you. Not all SPMSers have to go without meds.

        Take care
        Lisa
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Originally posted by CindyLWho View Post
          Hi,

          I am looking for others that have also been diagnosed with SPMS? I've looked around in here; so far, no luck. Anybody?

          I have questions pertaining to the difference(s), comparably, about what I am experiencing now and what I was experiencing in 2003, when I was initially diagnosed with RRMS and that diagnosis got retracted.

          Also, I'm hoping the clock can be "somewhat turned back" now that I'm being treated?

          All feedback is appreciated. Thank you!!
          Hi,

          There's a separate forum for those with Progressive "versions" of the disease, both PPMS and SPMS. I think if you look through that forum you'll find quite a few threads from those with SPMS.

          http://www.msworld.org/forum/forumdi...Progressive-MS

          I moved from RRMS to SPMS a couple years ago. I chose to stop DMDs at that time.

          I had a question about your tagline...you mentioned "rare atypical SPMS" what symptoms
          brought your doctors to that diagnosis, and I was wondering what exactly the diagnosis entailed.

          Comment


            #6
            I am currently being evaluated for a transition from RRMS to SPMS even though I am having flares.

            If I am SPMS...I have already told my docs that I am drawing a line in the sand. However, if any drug can help you, it would be Tysabri. I am currently on it and it has helped...but you have to do your research...it has very serious side effects.

            I too am wondering what Rare and Atypical SPMS is. First time that I have ever heard of it. Did your doctor explain it to you? If not, I would be asking questions.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

            Comment


              #7
              Thank you all so much for the feedback! A lot of good stuff here from everybody!!

              The reason my MS is labeled "Atypical/Rare, Complicated & Intriguing" is because when symptoms began in 1996, and since then, my MS has "evolved" in a fashion that my Providers have never witnessed ... nor have any others/facilities that they contacted.

              At one point, it was suspected that I had PML. My diagnosis rested on Atypical Leukoencephalitis for several years. In addition to the typical demyelination of MS, I have other things that don't appear relative to MS; however, when the MS changes occur ... so do the others. Most of this pertains to my white brain matter with now-confirmed encephalitis, encephomyelitis, dacryoadentis, ethmoidal septal thickening. I have had three lumbar punctures; 2005, 2009, 2015. All three came back clean, no bands that typically support the MS diagnosis.

              Given the nature of my progression, my MS now appears "textbook" ... however, these other changes/progressions are taking place to parallel and in conjunction with the now-obvious MS progression and diagnosis. Initially, it was believed for years that I may have two separate diseases taking place ... MS and something unknown. This has now proven not to be the case; hence, my "Atypical/Rare Complicated & Intriguing" diagnosis of MS.

              Thank you all, again, for the wonderful feedback. Much appreciated. My SPMS overwhelmingly appears to be the correct diagnosis after years of research and I am finally able to rest on this.

              Yours truly,

              ~ Cindy Lou Who


              DX'd on Wed., 02/04/2015, With Rare/Atypical SPMS
              MS Specialist/Neurologist, Verbatim: "Complicated & Intriguing"

              Comment


                #8
                CindyLWho, I have read this entire thread. Where in the 'USA' are you ? Do you see an 'actual' MS specialist ? I don't know anything about SPMS but I do know that there is a group that is focused on 'progressive' forms of MS. It is called ,something like, the 'progressive MS alliance'. You may want to 'google' them. And get on their email list. Good luck

                Comment


                  #9
                  Wow Cindy,

                  Sounds like you've had quite the "ride" with your diagnosis and differing diseases being considered.
                  Your journey to diagnosis reminded me of the Wheelchair Kamikaze's article The Misdiagnosis of MS.

                  His situation is totally different from yours, yet in a way the same. You both have baffling presentations of the disease. If you haven't read it, here's a link:

                  http://www.wheelchairkamikaze.com/20...rosis-and.html

                  Comment


                    #10
                    Hi Jerry ...

                    Thank you so much, I truly appreciate your concerns; I assure you, I am in the best hands. I posted more information here:
                    http://www.msworld.org/forum/showthr...early-20-years

                    ~ Cindy Lou Who


                    DX'd on Wed., 02/04/2015, With Rare/Atypical SPMS
                    MS Specialist/Neurologist, Verbatim: "Complicated & Intriguing"

                    Comment


                      #11
                      rdmc,

                      Thank you very much!!




                      Jerry,

                      I live in Missouri; however, I travel regularly for my care.

                      ~ Cindy Lou Who


                      DX'd on Wed., 02/04/2015, With Rare/Atypical SPMS
                      MS Specialist/Neurologist, Verbatim: "Complicated & Intriguing"

                      Comment


                        #12
                        WOW!!!

                        Thanks for the explanation...I truly learn something new everyday.

                        I have not shared this before, but I got Menengitis during one of my flares. Pales in comparison to what you have been tnrough. But I think it has made my course of MS worse.

                        I have had two LPs as well and no O-Bands. It is a little more common than you might think...they dont do as any LPs anymore because of it.

                        Cool name BTW...love Dr. Suess!
                        Katie
                        "Yep, I have MS, and it does have Me!"
                        "My MS is a Journey for One."
                        Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                        Comment


                          #13
                          Originally posted by KatieAgain View Post
                          WOW!!!

                          Thanks for the explanation...I truly learn something new everyday.

                          I have not shared this before, but I got Menengitis during one of my flares. Pales in comparison to what you have been tnrough. But I think it has made my course of MS worse.

                          I have had two LPs as well and no O-Bands. It is a little more common than you might think...they dont do as any LPs anymore because of it.

                          Cool name BTW...love Dr. Suess!
                          Thank you, Katie ...

                          True, what you say about the lumbar puncture. In my case, all the other "additional presentations" I have support my "complicated & intriguing" mess as well. It's been hell.

                          ~ Cindy Lou Who


                          DX'd on Wed., 02/04/2015, With Rare/Atypical SPMS
                          MS Specialist/Neurologist, Verbatim: "Complicated & Intriguing"

                          Comment


                            #14
                            Originally posted by CindyLWho View Post
                            At one point, it was suspected that I had PML. My diagnosis rested on Atypical Leukoencephalitis for several years. In addition to the typical demyelination of MS, I have other things that don't appear relative to MS; however, when the MS changes occur ... so do the others. Most of this pertains to my white brain matter with now-confirmed encephalitis, encephomyelitis, dacryoadentis, ethmoidal septal thickening. I have had three lumbar punctures; 2005, 2009, 2015. All three came back clean, no bands that typically support the MS diagnosis.
                            I just got another phone call on this. It appears that although the Leukoencephalitis (and the above-mentioned that pertains) has stopped, or at least paused, even though the MS progressed and I have one more new lesion in my spinal cord. This is very good news and now I am told that the Leukoencephalitis (although we don't know for sure yet) may NOT be a part of my MS and MAY BE a "different animal" altogether after all. Only time will tell. However, it appears that no progression on the part of the Leukoencephalitis took place to parallel that of MS that did, in fact, take place recently (as was the case consistently, prior). This is still under investigation.

                            Meanwhile, I have been on (as part of my long-term regimen), and remain on, Amoxicillin at 500 MG. 2x daily; it appears to be working. ??? My diagnosis now is Leukoencephalopathy (which means I have permanent damage in my white brain matter but progression has ceased). Leukoencephalitis is present tense, active white matter brain disease; I no longer have this diagnosis. Leukoecephalopathy is past tense (Leukoencephalitis WAS taking place but is no longer active or taking place at present.) The damaged/dead white matter, my diagnosis now, is called Leukoencephalopathy (having had active Leukoencephalitis previously). We have no idea if this is a separate issue or why this progression has been parallel with that of my MS; however, I have been running a fever for over a year now (and perhaps much longer) that has yet to be explained; we have not made that connection just yet either. I hope this makes sense.

                            This is very good news and I await concrete confirmation on this!! I hope and pray we can close on this Leuko'poop' but I'm not holding my breath either; not after this many years of "oopsies"!! Obviously, I have a million questions for them!! I will post updates as they become available.

                            ~ Cindy Lou Who


                            DX'd on Wed., 02/04/2015, With Rare/Atypical SPMS
                            MS Specialist/Neurologist, Verbatim: "Complicated & Intriguing"

                            Comment


                              #15
                              Originally posted by CindyLWho View Post
                              Hi,

                              I am looking for others that have also been diagnosed with SPMS? I've looked around in here; so far, no luck. Anybody?

                              I have questions pertaining to the difference(s), comparably, about what I am experiencing now and what I was experiencing in 2003, when I was initially diagnosed with RRMS and that diagnosis got retracted.

                              Also, I'm hoping the clock can be "somewhat turned back" now that I'm being treated?

                              All feedback is appreciated. Thank you!!
                              I have secondary progressive and was diagnosed in 2005 at 45.

                              Comment

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