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    #1

    Question about SPMS increased disability

    I was wondering about the reason why there is increasing disability in SPMS, yet not increased activity i.e. lesions, or relapses.

    My latest MRI was stable (i.e. no change, no new lesions, same lesions as before, report stated they have not "resolved", but nothing new, and no enhancement) and I've been off a DMD for almost a year (my choice.) But in light of the recent MRI and no flares, my neuro doesn't recommend going back on a DMD (big yeah for that one.) So it occurred to me, if my lesion load is the same, what causes the increased disability. I don't have a ton of lesions, really a light lesion load, just

    I've read about SPMS and classic course is increased disability, without increased brain MRI evidence, and no flares. And that has been what's happened. My neuro said even though there's no new activity, there's damage that had already been done, and I understand that. But if that's the case, why do the symptoms and neuro exams worsen, and the disability increases, if you're dealing with lesions that aren't changing (and the worsening symptoms are the same old, same old symptoms, they're just getting worse, or more pronounced.)

    This question, of course, dawned on me after I left the dr's office And I'm sure you guys can explain it to me....Thanks in advance.
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    #2
    The way I understood this from my Nuero, was the lesions that show up in the MRI is the damaged myelin. Now after time, the exposed nerve that used to be covered in myelin gradually sustains increased damage which won't show up on an MRI. This is also why the symptoms increase as the damage to the exposed nerve fibers gets worse. Made sense to me anyway.

    Unfortunately though, this also means that the damage is done and the symptoms will only get worse and can never be repaired. I hear the latest research on a new med that restores myelin is looking promising and while this won't help an already damaged nerve, maybe someday this will help keep folks from becoming Secondary Progressive.

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      #3
      Also,

      Much of the damage in Primary Progressive MS is diffuse, and throughout the brain. In other words, there is no new lesion to visualize, because the damage is more widespread. Lesions tend to be fewer in number and smaller. There is also higher likelihood of cognitive issues. I don't know if any of that is true of SPMS.

      Comment

        #4
        Originally posted by MS TOO View Post
        The way I understood this from my Nuero, was the lesions that show up in the MRI is the damaged myelin. Now after time, the exposed nerve that used to be covered in myelin gradually sustains increased damage which won't show up on an MRI. This is also why the symptoms increase as the damage to the exposed nerve fibers gets worse. Made sense to me anyway.

        Unfortunately though, this also means that the damage is done and the symptoms will only get worse and can never be repaired. I hear the latest research on a new med that restores myelin is looking promising and while this won't help an already damaged nerve, maybe someday this will help keep folks from becoming Secondary Progressive.
        This was basically how it was explained to me too. Also said was that I won't suffer again those extreme attacks like with RRMS. Just a steady decline.

        Good news, bad news.
        Karen

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          #5
          JCrain and MStoo,

          Thanks for the input.

          I had read with PPMS that there were fewer lesions, but I definitely started put RRMS, even though most of my original symptoms, never went completely away...they would go back to a baseline. Last few years, no noticeable flares it's just the original symptoms don't remit and just get gradually worse.

          As far as cognition, I did read that in SPMS and PPMS, it could be more of an issue. My short term memory is shot...but I'm still able to work (my work is entirely web based.) I just have to keep lots of screens open, where before I might have been able to remember the data I needed, instead of constantly having to go back and check on it...cut and paste is my friend

          My neuro told me that a lot of times after years with the disease, they'll see the pattern of less lesion activity.

          thanks again for your insight.

          Comment

            #6
            Hi! I also was told this year I've slid into SPMS.I've had this MonSter for 13yrs,& my neuro told me thats how it progresses. I have lost mobilty & function,I use a Rollator at home & wheelchair when out. I know I should be exercising more to keep what function I have,but my recliner is just so cosy,it's a "Lift chair" & my books so near, & view so lovely I'm just a "body at rest" LOL!
            I also am not on DMD anymore but that is another long story,my neuro is OK ( sorta) w/ that.
            Keep us posted God Bless Nona

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              #7
              mri stable

              that's what my neuro said, after my last MRI. He had also said that at MRI 2 years before that.
              Hmmmm, I am thinking I wish my legs had talked to my brain, cuz they had not heard the news about stabilizing. I knew i was worse, neuro knew I was worse, screw the MRI.
              thanks for sharing explanations. i also stopped torturing myself with Copaxone shots. wish i had better news than, I know what you mean!
              Rosie

              Comment

                #8
                Originally posted by Rosieva View Post
                Hmmmm, I am thinking I wish my legs had talked to my brain, cuz they had not heard the news about stabilizing.
                Good one Rosieva! I hear you~

                and thanks for asking the question rdmc - I have often wondered the same. I'm glad I'm not riding the RRMS roller-coaster anymore and I don't miss the DMD's. My doctor mentioned that I had hit a plateau of sorts, but as far as my walking ability and general weakness, it feels like I've hit a slippery slope!

                I exercise to the best of my ability now - walking (slowly), stretching, yoga, a little bit of weight lifting, etc and still it progresses downward. Ironically, and in spite of this, I feel really good most days! Like KarenKay says "good news, bad news"
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

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                  #9
                  Thanks for all the replies. Looks like what I'm experiencing is the regular pattern for secondary.

                  I too am glad no DMD.

                  And Roseiva, I love your comment...wish my legs would have gotten the message too.

                  I have started going to a Balance Center for PT, and I do think it will help me with some balance issues and strategies to cope with it.

                  Comment

                    #10
                    Thanks, rdmc.
                    As discouraging as it is to have MS worsen, and tempting to just give up, you are right that we can still benefit from therapy, physical activity.

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