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    lesions: brain or spinal? rrms or ppms?

    Yet another lesion question:

    This is from the NMSS website :

    "People with RRMS tend to have more brain lesions (also called plaques or scars), containing more inflammatory cells, while people with PPMS tend to have more spinal cord lesions, containing fewer inflammatory cells."

    I'm curious,

    are your lesions brain or spinal (or both)?
    are you RRMS or PPMS?

    I'm RRMS but had cervical lesions with no active inflammation per MRI w/contrast (but I think the LP showed inflammation, not sure.)
    Brain MRI showed no lesions at the time and was done without contrast.

    Just wondering. Slowly learning about all of this & the above quote had me wondering if I'm headed towards PPMS (quickly)

    source:
    http://www.nationalmssociety.org/abo...-ms/index.aspx

    #2
    I have mostly spinal lesions and only a few brain lesions.

    I am RR

    At the time of diagnosis my MRI was clear. My Neurologist said based on my symptoms this disease was affecting the spinal cord...he was correct.
    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

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      #3
      At this point I only have brain lesions and no spinal lesions. I was dxd RRMS.

      IMHO, MS presents differently in everyone. I don't even know how much I buy into the different types of MS to be honest. I think currently, the RRMS dx vs PPMS dx really depends on how it presents itself. Do you exacerbations? Do you recover? Or do you slowly decline? Rather than location of lesions. If you tend to exacerbate and recover they consider you RRMS. If you slowly decline, they may consider you PPMS/SPMS...

      Unfortunately, if you are progressing (RRMS) and/or progressive (PRMS/SPMS/PRMS) and you get more lesions on your spine vs brain, there is a higher chance that you will show disability quicker. Though, you get a lesion in the right spot in the brain, it could kick your butt too.
      dxd RRMS 7/2011 - Rebif 8/2011 - Tecfidera 7/2013

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        #4
        I only have brain lesions and am SPMS

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          #5
          I have both, brain lesions and some cervical spine lesions. The most typical progression of RRMS is from the brain down the spinal cord, so my MS is behaving in the most typical progression for MS. if it continues to behave text book classic it will go down my spine. but ms isn't a typical disease and for some it starts, stops in the spine, or goes in the opposite direction starts in the spine goes toward the brain. its a disease of the CNS....whichever part of the cns.

          The spine does not reliably pick up the dye. Both active & inactive lesions are hyper intense on a t2 scan, but only active lesions enhance with gd dye on a t1 scan which differentiates the 2 types of active/inactive lesions lesions.

          since the spine does not reliably pick up the dye to enhance its not possible to know if a spine lesion is active. a doc just has to make a conclusion from the clinical symptoms if it more or less likely to be active.

          the spine does not reliably pick up the dye means that sometimes it does & sometimes it doesn't its just a nice bonus when it does pick up the dye and it known with more certainty that it is active(inflamation).

          I'm RR. the presentation of the symptoms are more definitive to whether it PP or RR, not the mri alone. PP has an "insideous" presentation of symptoms. RR is relapses. SP has a period of relapses before "insideous" part.. PP & PR does not have a period of relapses first. The info on the MRI does not determine, its clinical symptoms with consistent MRI that does determine.
          xxxxxxxxxxx

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            #6
            I have both. There were enhancing lesions in both c-spine and brain in my 8/2011 MRI's. Doc tells me I have SPMS.
            At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave Barry

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              #7
              I have both, several on brain, one was 1.2 cm, and on cervical spine C-4 - C5 and C-5 - C-6 I believe.

              They said I was PPMS. I don't recall ever having a "flare" and don't think I've ever recovered from anything.

              Vertigo in 2004 left behind imbalance, foot drop in 2010 is still foot drop, spasticity on right leg from 2010 just getting worse.
              Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
              Ampyra 10mg 2xday
              Copaxone 1/20/12

              Comment


                #8
                Originally posted by candycane View Post
                Yet another lesion question:

                This is from the NMSS website :

                "People with RRMS tend to have more brain lesions (also called plaques or scars), containing more inflammatory cells, while people with PPMS tend to have more spinal cord lesions, containing fewer inflammatory cells."

                I'm curious,

                are your lesions brain or spinal (or both)?
                are you RRMS or PPMS?

                I'm RRMS but had cervical lesions with no active inflammation per MRI w/contrast (but I think the LP showed inflammation, not sure.)
                Brain MRI showed no lesions at the time and was done without contrast.

                Just wondering. Slowly learning about all of this & the above quote had me wondering if I'm headed towards PPMS (quickly)
                Candycane,

                You don't head towards PPMS...you are there from the beginning. PPMS usually, almost always, strikes a person in the 40's - 50's...are you even close to this?

                Because of your lesions, you are questioning whether you are RRMS or a more Progressive variety. I would pay more attention to your symptoms and experience with the MS than to where my lesions were. Just my opinion.

                If you ever had a steroid treatment and responded positively to it...you don't have PPMS. If you have flare ups, relapses, etc....you don't have PPMS. IMHO if you have the whole numbness, tingling, sensitive skin thing...you don't have PPMS. However, if you have had a very slow and gradual loss of strength, inability to stand, walking issues...then it points closer to a Progressive course.
                Hope this gives you another POV..

                P.S. really don't want to hear about how my opinions may differ from others. These are my opinions and I'm entitled to them.

                Comment


                  #9
                  I'm with Windwalker. Determining your type is more based on how your MS behaves, not your MRI.

                  Also, take into consideration the numbers. Up to 90% of PwMS will have cord involvement. 85% of people dx'd with MS will be dx'd with RRMS, 10% with PPMS and 5% with PRMS. That means the vast majority of people with cord lesions will have RRMS. What you read on the NMSS site is a very general statement that often holds true, but not always. This is why they used the word "tend". Keep in mind that having cord lesions is very , very common and does not exclude RRMS or strictly dx PPMS.

                  If you ever had a relapse at all you can not have PPMS. It is progressive from the very start, you can't go from another type to PPMS. The only kind of MS that can change to another is RRMS and it can only change to SPMS.

                  To answer your questions, I have both brain and cord lesions and have PRMS.

                  Comment


                    #10
                    Guidelines and not Rules

                    Originally posted by candycane View Post
                    "People with RRMS tend to have more brain lesions (also called plaques or scars), containing more inflammatory cells, while people with PPMS tend to have more spinal cord lesions, containing fewer inflammatory cells."
                    interesting in what you read about MS, they are guidelines not rules...they provide a piece of the puzzle when added with other pieces of the puzzle provides the basis for a conclusion.

                    My doc pointed that out to me after my diagnosing episode. i did 5 days of steroids, read every thing i could about MS--then 20 days later the opposite side of my body was affected in an apparent second relapse???

                    I told the doc this cannot be another relapse, because ms relapses have to be seperated by 30 days , this is 20 days so it cannot be a another relapse yet.

                    He opened his eyes wide and looked at me in astonishment..."those are guidelines lynn, not rules. those are guidelines you are reading and this is a 2nd relapse!"
                    xxxxxxxxxxx

                    Comment


                      #11
                      I really learn (or relearn?) a lot reading these posts..Thank you Mrs Bones
                      I just wanted to add that when I went to my 2nd Neurologist in early 90's he told me "There aren't different types of MS..each person just reacts differently"

                      He was correct for 'the thought' at that time but now we know there are different types RR, PM, and PP. It is true we react differently but have similar sxs.

                      Understanding MS has come a long way in the past 20 years and I believe more is coming
                      Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

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                        #12
                        I have only 1 1/2" lesion but have brain atrophy in my cerebellum and each of my frontal lobes. I have classic symptoms of PRMS but dr. has dxd RRMS. I have only seen him for 3 visits though and he does not have a thorough history yet. Dr. says my symptom of MS Hug means I have a spinal lesion.

                        Comment


                          #13
                          Originally posted by Camsue View Post
                          I really learn (or relearn?) a lot reading these posts..Thank you Mrs Bones
                          I just wanted to add that when I went to my 2nd Neurologist in early 90's he told me "There aren't different types of MS..each person just reacts differently"

                          He was correct for 'the thought' at that time but now we know there are different types RR, PM, and PP. It is true we react differently but have similar sxs.

                          Understanding MS has come a long way in the past 20 years and I believe more is coming
                          Thanks!

                          If you ask me, the types are so muddy, he may still be right. More and more research is showing that even the folks with RRMS have a degree of progression early on in the disease and that there may be no true remission, just quieter periods without the inflammation of relapses, but with independent neurodegenerative processes occurring.

                          The types were only defined after the trials for Betaseron, when they thought they developed a treatment for all PwMS . They discovered that the drugs worked best in a group of people whose MS followed a certain pattern of activity (RRMS) and then noticed the other patterns in the process. And the terms RRMS,PPMS,SPMS and PRMS were born.

                          What they really discovered, if you think about it, is that DMDs help prevent relapses and lesions. According to some research it looks like we're all progressive to a degree and some of us have more relapses than others, while some lean toward the progressive end. Beyond PPMS, it's all a mish-mash anyway with the types so hazy, we might as well go back to the simple MS and just give DMDs to anybody who has relapses.


                          http://www.neurology.org/content/60/7/1157.short

                          http://www.sciencedirect.com/science...22510X07001451

                          http://www.neurology.org/content/60/7/1157.short

                          http://journals.lww.com/co-neurology...ion_and.3.aspx

                          http://onlinelibrary.wiley.com/doi/1...9.00003.x/full

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