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    Question: No Change in MRI but Still Progressing

    Confused! My MRIs have been stable (i.e., no new lesions or change in lesions) since diagnosed in 2011 - THANKFULLY; however, my symptoms have definitely progressed since diagnosis.

    >Lesions at diagnosis (and still today): Brain = 6; Cervical Spine = 1 at C1
    >Symptoms when diagnosed: Left leg/hip weakness; Left knee tingling/vibrations; fatigue

    Since 2011, running has turned to slow and unstable walking with left leg foot drop (need cane when fatigued). Left arm/hand much weaker. Physical and mental fatigue has gone from very mild to severe. Cognition issues have gone from being non-existent to now affecting me on a daily basis. Was able to work FT (office job) but now not able to work due to fatigue and cognitive limitations.

    Question: Is it normal to progress without changes to lesions?

    All feedback is welcomed. Thank you.
    PPMS; DX April 2011
    Copaxone 40 mg (April 2011 - May 2017); Ocrevus (July 2017 - current)

    #2
    Originally posted by az View Post
    Question: Is it normal to progress without changes to lesions?
    Hello az

    It is not uncommon for MS to progress without an increase or change in lesion load, as detected by MRI scans.

    This is often referred to as the Clinical-MRI Paradox in MS, which refers to the weak correlation of lesion load to clinical disability.

    In other words, it is possible to have many lesions present on an MRI scan with very few clinical symptoms. And there could be very few lesions on MRI with considerable disability.

    MRI's aren't always able to detect the damage that occurs to the axons or myelin.

    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


      #3
      WELCOME TO MS WORLD AZ!!!! it is great to have you here, but I am sorry why. Ask as many questions as you can think of, and I am pretty sure that someone will have some experience with it and be able to give you answers. We also feature chat rooms and the chat room is open 24/7, and there are regular scheduled chats every night at 8 PM Eastern.
      you got a pretty good explanation from koko. In my case, my MRI has not changed in quite a few years, but my level of progression has increased significantly. A friend of mine who was diagnosed about 30 years ago as a bunch of lesions and nearly no disability. And that friend is RRMS and I am PPMS. I do not know if there is a correlation between the two, but I am sure if there is someone here will know.
      hunterd/HuntOP/Dave
      volunteer
      MS World
      hunterd@msworld.org
      PPMS DX 2001

      "ADAPT AND OVERCOME" - MY COUSIN

      Comment


        #4
        Originally posted by hunterd View Post
        In my case, my MRI has not changed in quite a few years, but my level of progression has increased significantly. A friend of mine who was diagnosed about 30 years ago as a bunch of lesions and nearly no disability. And that friend is RRMS and I am PPMS. I do not know if there is a correlation between the two, but I am sure if there is someone here will know.
        Hunterd makes a good point about lesions in RRMS vs lesions in PPMS.

        According to this info from the National MS Society, persons with PPMS tend to have fewer brain lesions than persons with RRMS.

        http://www.nationalmssociety.org/Wha...progressive-MS

        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


          #5
          KoKo and Hunterd, I appreciate your feedback and you, Hunterd, for sharing personal experiences.

          Also, thanks for the info about the chat room. I'll definitely be checking it out.

          Take care.
          PPMS; DX April 2011
          Copaxone 40 mg (April 2011 - May 2017); Ocrevus (July 2017 - current)

          Comment


            #6
            Progression with. No change in MRI

            Hi AZ does this mean you are in Arizona?? I was diagnosed in 2007. I don't know that I ever knew how many lesions I had or where they were located. They were old with no activity and yet I had plenty of symptom including balance, cognition, memory, night vision problems, judgement problems, severe sensitivity to heat resulting in confusion and physical weakness. I could go on, but you get the gist. With all this going on my Annual MRIs never changed. Oh can't be I left out fatigue! With the exception of left side weakness which causes limping swinging and occasional kneebuckling when fatigued, my EDS level is very low and yet the MS is still progressing. My understanding is usually when Eds levels are low MS is more likely to affect cognition. Sounds a little like what you are experiencing. Well who knows that's my story and I'm sticking to it! Still relapsing unremitting until I'm not

            Comment


              #7
              AZ with progression

              I noticed thread was for primary progressive. Are you saying you have been diagnosed primary progressive Stage MS and you have no change in your MRI? We're you diagnosed based on the severity of your relapses?

              Comment


                #8
                Originally posted by Wonderdog lady View Post
                I noticed thread was for primary progressive. Are you saying you have been diagnosed primary progressive Stage MS and you have no change in your MRI? We're you diagnosed based on the severity of your relapses?
                Yes, PPMS and no changes to MRI since the lesions were found early 2011. I was diagnosed PPMS based on no relapses since my first symptoms, which was 3-4 years prior to dx.
                PPMS; DX April 2011
                Copaxone 40 mg (April 2011 - May 2017); Ocrevus (July 2017 - current)

                Comment


                  #9
                  Originally posted by Wonderdog lady View Post
                  Hi AZ does this mean you are in Arizona?? I was diagnosed in 2007. I don't know that I ever knew how many lesions I had or where they were located. They were old with no activity and yet I had plenty of symptom including balance, cognition, memory, night vision problems, judgement problems, severe sensitivity to heat resulting in confusion and physical weakness. I could go on, but you get the gist. With all this going on my Annual MRIs never changed. Oh can't be I left out fatigue! With the exception of left side weakness which causes limping swinging and occasional kneebuckling when fatigued, my EDS level is very low and yet the MS is still progressing. My understanding is usually when Eds levels are low MS is more likely to affect cognition. Sounds a little like what you are experiencing. Well who knows that's my story and I'm sticking to it! Still relapsing unremitting until I'm not
                  Hi, Wonderdog lady.

                  Yes, I live in AZ. I, too, am extremely heat sensitive, so you know how summertime is. 😒 Thanks for sharing your story. Sounds like our symptoms are very similar.

                  Good luck in your fight. Take care.
                  PPMS; DX April 2011
                  Copaxone 40 mg (April 2011 - May 2017); Ocrevus (July 2017 - current)

                  Comment


                    #10
                    Progression with. No change in MRI

                    I wonder why I was diagnosed relapsing remitting when I have never had any relapses in 9 years? Just a bunch of lousy pseudo stuff and no change in MRI. Guess I will look up the definition of the stages again.

                    Are you in the Valley? We lived in Phx until about 7 years ago. If I lived there I would be housebound 9 months out of the year. As it is there are times in the summer when I still don't leave the house and we live at 5,000 ft! I carry a small UV umbrella with me when I have to brave the heat. I have a giant one to huddle under when I work in the yard. Works pretty well actually.

                    I would be very interested in your journey. I think I read that you were trying to retire. I wish you luck with that process. Nice to talk to someone in AZ

                    Comment


                      #11
                      something else that I do not think I mentioned is that many doctors ( not all) wil diagnose patients with rrms in hopes that one of medicationS will help to curb the progression. It is very difft needsicult to diagnose PPMS, so they begin with RRMS ( at least that is what my doctor told me) and go from there. Just a little personal experience ( not all doctors will be like mine).
                      hunterd/HuntOP/Dave
                      volunteer
                      MS World
                      hunterd@msworld.org
                      PPMS DX 2001

                      "ADAPT AND OVERCOME" - MY COUSIN

                      Comment


                        #12
                        Originally posted by Wonderdog lady View Post
                        Are you in the Valley? We lived in Phx until about 7 years ago. If I lived there I would be housebound 9 months out of the year.

                        I would be very interested in your journey. I think I read that you were trying to retire. I wish you luck with that process. Nice to talk to someone in AZ
                        Yes, I live in the valley. Doing outside things early in the morning, wearing a cooling vest, and always in, or staying near, a place with AC. I tend to push myself way too much when outdoors, but my wife stays after me and does her best to remind me this is a disease you need to respect (i.e., hate it all you want but know your limits). Without her I'd be a mess physically and mentally.

                        As for retirement, yes, I'm retiring far too soon. Can't do it any longer. Battling STD at the moment. It's truly unfortunate to be stuck having to prove certain symptoms are very real and debilitating even though they cannot be seen or confirmed with tests. One way or another I will get through this STD, LTD and SSDI circus.
                        PPMS; DX April 2011
                        Copaxone 40 mg (April 2011 - May 2017); Ocrevus (July 2017 - current)

                        Comment


                          #13
                          Oh thank you Hunterd
                          that explains a lot. I do believe that my Neurologist is one of those doctors who diagnoses first time with relapsing remitting MS. I never understood how he Came to this conclusion.

                          We are big gardeners and I have similar problem I don't know when quit. My husband keeps tabs on me and has to tell me when to quit. We have almost on acre of land on very hilly terrain. Gardening is my joy but some of the work I do is too much like clearing out brush .and trimming up trees. I work with dogs too so I am teaching one of them to take one of my garden gloves to my husband if I need help. I always try to have my phone with me and water and a cooling cloth on my neck. When I quit I usually leave all my tools behind and my husband has to come and get me with a UV umbrella because there is a large open area without shade that I have to cross to get back to the house. The Sun is to me like kryptonite is to Superman!

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