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    What are your remissions like?

    Just puttin' it out there as I have never had one in 10 years of having M.S.
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    #2
    Do you mean relapses?

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

    Comment


      #3
      Have you never had any relapses, Tawanda?

      A "remission" for me means:

      - LHermittes decreases in intensity
      - pain decreases or goes away completely
      - fatigue improves
      - walking starts to improve
      - bi-lateral leg weakness improves
      - tremors decrease

      My mobility is usually severely affected by exacerbations. Although my mobility will start to improve it requires quite a bit of work on my part (PT/exercise) to bring my mobility back to baseline.

      I do much better during "remission than when I am actively in an exacerbation. Three (3) of my five (5) exacerbations have been really nasty.

      There were times exacerbations scared me enough to wonder if I would be able to live my life under the conditions I was experiencing.
      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
        Originally posted by 22cyclist View Post
        Do you mean relapses?

        Lisa
        The remitting part of relapsing/remitting, sometimes referred to as a remission. I spun this thread off of my other thread about what suprises people sbout MS once they are actually diagnosed and living with it...
        Tawanda
        ___________________________________________
        Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

        Comment


          #5
          Originally posted by Tawanda View Post
          Just puttin' it out there as I have never had one in 10 years of having M.S.
          Remission just means not in an active inflammatory relapse.

          If you are primary progressive or progressive relapsing it's understandable that you would be curious about what remission is like since PPMS and PRMS don't' have relapses and remissions.

          But if you are relapsing-remitting, the typical course of RRMS says you have actually been in remission more than you have been in relapse. The inflammatory relapse phase lasts for about 6 to 8 weeks, and placebo trials of MS medications have shown that the average person who isn't on a DMD has 1 maybe 2 relapses per year. So that would be about 8 to 16 weeks of relapse and 36 to 44 weeks of remission per year for them. Maybe fewer relapses and more time in remission for people on a DMD.

          The "remission" part of RRMS is a misleading term because in MS remission doesn't mean "all better" or "back to normal". People in remission can still have remaining symptoms.

          But the remitting phase includes at least a little bit of improvement in symptoms and function as the inflammation subsides and some amount of remyelination takes place. If you are expecting that those 36 to 44 weeks of remission per year would mean that all of your symptoms would go away then it's understandable why you wouldn't recognize when you are in the remission phase.

          I always have some improvement after a relapse, but I don't always go back to where I was before the relapse. So remission doesn't mean "all better" like remission in cancer means that there are no visible signs of it.

          If you have been told that you are relapsing-remitting but you have never ever had even the tiniest shred of improvement after a relapse, that doesn't sound like RRMS. That sounds like progressive relapsing.

          Are you primary progressive or progressive relapsing? If not, what does your neurologist say about you never having a remission?

          Comment


            #6
            My doc has always puts RR down on my chart, but who knows why. I could be any of the others. Personally, I am not hung up on whatever he writes or MS labels in general. I thought I was supposed to have periods where it felt like I did before I had MS. I can definitely say that is not the case. There is always something twitching or buzzing when I am in stillness and my fatigue is relentless and constant (worst symptom by far).

            I wish I had a better brand of M.S., although I know that there are worse. I have an MSer in my extended family confined to her bed and a permanent catheter situation. Definitely worse. The fact that I can't work and bring home a paycheck does probably put me under the "Suckier Than Some Other People's M.S." category, however.
            Tawanda
            ___________________________________________
            Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

            Comment


              #7
              I think it is less about labels and more about available treatments, at least for me. I have PPMS so there really isn't anything available. If I had RRMS, you bet I'd try some DMTs.

              Comment


                #8
                Originally posted by misslux View Post
                I think it is less about labels and more about available treatments, at least for me. I have PPMS so there really isn't anything available. If I had RRMS, you bet I'd try some DMTs.
                When I was first diagnosed, I told my neuro about my relative, who, if you want to put an MS label on her, is primary progressive. He said he would still put her on a DMD if she was his patient. Too many unknowns as to their effectiveness/ineffectiveness right now, so maybe they could help? Maybe they won't, but that the risk is minimal to her, that it would be worth a trying.

                I just think MS has way too many tentacles to neatly arrange into the few boxes they've listed thus far. If I owned the world, every MS person would have their own MS label!

                I admit when I was first diagnosed, I was obsessed over those labels, as if they could help me to make sense of a disease thatbto me, makes very little sence.

                Now I think these neat little labels just don't cut it. MS is too messy to be harnassed so easily. Some theorize that MS could actually be a combination of diseases. Maybe that is why we seem to experience this disease so differently.

                Oh, by the way, if you have happy, productive remissions (and if this is not an MS urban legend!), how long do they last and how do you know they are ending...is it gradual or sudden? Must be a bummer to feel good then crash and burn. What a tease that would be!
                Tawanda
                ___________________________________________
                Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                Comment


                  #9
                  Helpful Thread

                  Because it is said to be "remiting" I expected to go back to how I was before and that NEVER happened. I do get somewhat better, then I have bad days and good days but after an actual flare I don't go back to where I was. It always scares me but I am just glad when it starts to get a little better. I know it could be worse and that sucks!

                  Comment


                    #10
                    Originally posted by MSer102 View Post
                    Remission just means not in an active inflammatory relapse.

                    If you are primary progressive or progressive relapsing it's understandable that you would be curious about what remission is like since PPMS and PRMS don't' have relapses and remissions.

                    But if you are relapsing-remitting, the typical course of RRMS says you have actually been in remission more than you have been in relapse. The inflammatory relapse phase lasts for about 6 to 8 weeks, and placebo trials of MS medications have shown that the average person who isn't on a DMD has 1 maybe 2 relapses per year. So that would be about 8 to 16 weeks of relapse and 36 to 44 weeks of remission per year for them. Maybe fewer relapses and more time in remission for people on a DMD.

                    The "remission" part of RRMS is a misleading term because in MS remission doesn't mean "all better" or "back to normal". People in remission can still have remaining symptoms.

                    But the remitting phase includes at least a little bit of improvement in symptoms and function as the inflammation subsides and some amount of remyelination takes place. If you are expecting that those 36 to 44 weeks of remission per year would mean that all of your symptoms would go away then it's understandable why you wouldn't recognize when you are in the remission phase.

                    I always have some improvement after a relapse, but I don't always go back to where I was before the relapse. So remission doesn't mean "all better" like remission in cancer means that there are no visible signs of it.

                    If you have been told that you are relapsing-remitting but you have never ever had even the tiniest shred of improvement after a relapse, that doesn't sound like RRMS. That sounds like progressive relapsing.

                    Are you primary progressive or progressive relapsing? If not, what does your neurologist say about you never having a remission?
                    We don't even discuss it. I think we have an unspoken agreement that MS is never off duty.

                    Why would I push for any other label besides MS? There is barely any treatment for RRMS and nothing for the others. I do think insurance companies buy heavily into the label thing, so i just assume I will continue to ride that RRMS train. I can continue a treatment that nobody is sure is working for RRMS but can't say for sure that they are NOT helping the others.

                    If there really is anything to these labels, I wish you could take a blood test, pee on a stick or spit into a test tube and know. It just seems unlikely to me that this complex disease could be dummied down as easily as a small handful of subcategories would lead one to believe.
                    Tawanda
                    ___________________________________________
                    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                    Comment


                      #11
                      I have RRMS. I have attacks on average once a year, usually in the spring. My attacks last about a month. I try not to do steroids since they make me so ill, but I usually cave after 3 weeks or so. I end up missing about 2 weeks of work at most. It takes a couple weeks after steroids to feel back to normal.

                      In the beginning I went back to normal in between attacks. Then the last 2 years I had some numbness in my foot, hand and a little foot drop when I would overdo it. You couldn't tell from looking at me or my gait. I started Tecfidera in June and now that numbness and foot drop is completely gone. I know Tec isn't supposed to make things better, just prevent new attacks, but it is what it is.

                      I did take a high dose of vit D a couple weeks ago and my leg was weird numb/cold for a week then back to normal. That happened the last time I took a large dose so I'm done with that!

                      I am thankful my MS is tolerable, right now. I'm scared of the unknown and what my next attack will bring. I'm scared of not having "remissions." I have small children and need to work. I don't have time for MS! Ugh.
                      Optic neuritis 1999.
                      RRMS diagnosed 2007.
                      Copaxone 2007 - 2013.
                      Tecfidera June 2013 - present.

                      Comment


                        #12
                        Remission

                        Remission to me means being able to wheel the cart back to the produce section when I forgot avocados, while a flair means thinking, "Ok. I need that lettuce there, but it's a whole 5 meters away, so it's too far to bother getting". Three months ago I started my worst flair ever that basically took away my ability to walk more than a few meters. Now it's suddenly lifting, for no apparent reason. It feels awesome, and even though I've been through this before, I get the feeling that this is it! No more MS! Hmmmmm. One can hope. I also realized that I've posted various comments that centre around buying produce at the grocery store, but that just goes to show how small my world became for a while. My time was spent in my apartment with exciting outings to the grocery store once a week, lol. At the worst point, I knew I had about a 10 minute window to be able to walk, so I planned my route beforehand down to the smallest detail. Now today, I zipped around the grocery store (with the cart for balance, of course). That is what a remission means to me

                        Comment


                          #13
                          I often wonder if I truly have RRMS. I had my first symptoms in 2002. The left hand tingliness has never left. I had weird things in early 2006 which led to my first MRI and the diagnosis.

                          I can't say I've ever had a relapse or gotten better. Some days I'm a bit slower and feel heavier. My balance seems to get progressively worse.

                          Since I'm on a med, I just don't worry about what kind of MS I really have, and just deal with it.
                          Brenda
                          Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

                          Comment


                            #14
                            Originally posted by 4boysmom View Post
                            I often wonder if I truly have RRMS. I had my first symptoms in 2002. The left hand tingliness has never left. I had weird things in early 2006 which led to my first MRI and the diagnosis.

                            I can't say I've ever had a relapse or gotten better. Some days I'm a bit slower and feel heavier. My balance seems to get progressively worse.

                            Since I'm on a med, I just don't worry about what kind of MS I really have, and just deal with it.
                            I am in the same boat. I wonder if DMDs have ever been helpful or necessary for me.
                            Tawanda
                            ___________________________________________
                            Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                            Comment


                              #15
                              I wonder the same thing. I think the meds cause a lot of my fatigue issues. I may bring this topic up with my neuro at my next visit.
                              Brenda
                              Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

                              Comment

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