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SP- worsening of old damage- any one tracked this?

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    SP- worsening of old damage- any one tracked this?

    Hi Everyone,
    Wanted to pick the brains of other SPMS'ers . have read many posts about SP but haven't found any that quite cover my ?'s.

    My main problems with SP over the last few years is Brain atrophy and cognition problems.
    This was very worrying for me- have felt like i'm losing the plot- but have slowly come to terms with this and was ,hopefully, looking forward , to trying one of the new treatments when available , like Ocrevus, to slow progression.

    But over the last year i have been experiencing increased pain -mostly nerve- and this is a new worry I would like to compare notes with others with.

    All the info on SPMS that I have read says that the progression that occurrs, is worsening of damage previously done, when we had attaches when we were RRMS.

    My very first 'major/noticeable' attach was when i was completely paralysed for a couple of weeks and then slowly recovered , though i had a lot of weakness and extreme pain in my back, neck and hips for a long time(years) after.

    It was later (years) that a spine MRI detected a large (old) lesion on the brain stem.
    I now believe this is what caused my initial problems.

    My next most severe attache involved complete loss of speech.

    There were other less severe attaches of course but these 2 were the most debilitating.

    My query is - has any one backtracked their attaches and damage and has it been their experience that the symptoms and damaged areas that they remember occurring are the same ones that are causing them problems now?

    IE- can my increased back, neck and hip pain and increased nerve sensations that are beginning to bother me now, be attributed to the worsening of the damage done in my brain stem 30yrs ago.

    I appreciate any and all feed back from those dealing with SPMS who can look back and compare the issues they are having now and compare them to the ones they had previously..

    If I'm going to 'redo' the things I did in the past -And it's not going to remit anymore- I don't think i can cope with not being able to talk- hubby might think it's great - but to me - thats END GAME.


    Come on Guys- surely someone has something to offer?!



      I have no real answers to your question(s) but will relate what I heard at an MS Roundtable recently. In talking about SPMS (they didn't like the term, btw), they agreed that generally SPMS progresses with increases or exaggeration of prior symptoms and can also mean the development of new symptoms, with or without an increase in visible lesions at the time. They also agreed that the predictability of "progress" was, as we know, tricky at best.

      I don't think that tells you anything you don't know already, and I can't guarantee that I didn't miss something during their discussion, but that's what I remember.

      Personally, I have just developed several new-for-me symptoms in motor and cognitive fields. How much can be explained by my SPMS and/or how much by brain atrophy, I have no idea. I do know that the amount of brain atrophy I think I have seen (on my MRIs) scares me and makes me have to work at being as upbeat as I think I should be. My question: Will this resemble dementia in addition to the motor, etc. issues? I thought I read somewhere that dementia is unusual in patients with MS??? Were they just playing word games? Do you know?

      Sorry, Carolinemf. I don't think my reply has been any help, but l hope you know someone cares...Hang in there and maybe we'll both get some answers in the next few posts



        Thanks Carol.
        Yep the atrophy and cog probs are worrying me .
        But my 'waffling on' and giving too much info has probably made people unsure what i was asking.
        So thank you for replying.
        My neuro was the first one to mention a similarity to aged dementia to me. He showed us on a chart how the brain (average one)begins to spiral downward in its ability to retain and retrieve (etc) information at about 50 yoa roughly. In a person with ms or other cns diseases this can occur much earlier and the downward spiral is generally quicker and more severe.
        I don't think he meant it was aged dementia - just that it presented in a similar way. So I don't think 'they are playing word games with us' but a lot of emphasis is now being placed on grey matter damage that wasn't before so its still a bit new and docs/researchers are probably still trying to work out as well as us.
        My doc listened very carefully to the memory issues i was describing to him and did say that it wasn't the same as the 'normal' forgetting where i put the keys etc that everyone does at some point . He also said that the distress my gliches was causing me was also an indicator - because i was aware some thing was wrong.
        I hope this helps with your ?'s. But i'm not sure either

        I actually mostly wanted to compare with others the similarity between their old attaches and the symptoms that are progressing now.

        My most severe attache occurred very quickly and affected my whole body from the neck down.
        I later learned that it was a brain stem lesion.
        I keep reading posts that say ms only (usually) occurs on one side at a time and had indicators before the initials onset that are noticeable (usually).
        I have had attaches that have been very typical of this usual description .

        But in the last year i have had a noticeable increase in weird nerve pain and sensations over my whole body and i know this sounds peculiar but i no longer get the Ll'hermittes sensation down my neck and back .
        I am concerned that the previous damage done by my original brainstem lesion is causing these things because of progression and increased damage to the brainstem area.

        So I was hoping to discuss with others if the progression for them was mostly new and more debilitating symptoms ?? OR were the majority of their current symptoms noticeable worsening of old ones.

        Of course the professional opinion basically says both. To hedge their bets and generalise?
        Maybe... Again .... just hoping to compare with others...


          Good possibility SPMS, but neuro won't put that label on.

          I fall into camp of both. After losing sense of smell, my next "relapse" was 6weeks of vertigo and ON. After that, I would tell my docs that my ability to focus and remember was altered. I used to read a book a week on train commute, after, I couldn't get through 2 books a year. I noticed my work output was different.

          After, was numbness/tingling right hand, right side joint stiffness.

          Fast forward, cog issues worse. Now have numbness right arm and hand. I still feel hot/cold/pain, but very delayed and diminished response. I have developed spasticity in right leg and arm, but again, pain in right arm diminished. And of course, brutal fatigue. When I try to ignore the fatigue, feels like any symptom I ever had during a relapse, including L'Hermites, come back with a vengence.

          At this point, not sure if SPMS or still RRMS with some progression, but Tysabri keeping relapses at bay. Since I have either had this either 24 or 38 years, I would definitely be in SPMS timeframe.
          DX 01/06, currently on Tysabri


            Hi Caroline how have you been feeling lately I haven't been on here much of late Im having a really rough time with my MS journey, what has the Dr got you doing have you started any diff/new treatments or just battling on.I feel like I'm on that slippery slide with no joy at the other end, I am sick and tired of trying to shake myself and drag myself around, I have turned into a grumpy old fart lately, I constantly remind myself " its not what you can't do its what you can do" but I feel like I'm kidding myself, next time on this planet I'm not ticking any of the boxes for extra diseases. hope winter is good for you and keep pushing on Craig


              Originally posted by dastardly View Post
              Im having a really rough time with my MS journey
              Hi Craig:

              It's been about 7 months since your Lemtrada treatment. You said a while back that you weren't feeling any worse than before Lemtrada. Has that changed?

              How would you sum up your Lemtrada experience? Was it worth it for you? Are you going to take the 2nd treatment?


                Hi Craig,
                I had noticed your diminished input and hope you were doing ok.
                I'm sorry you've been finding it rough.

                Thanks for asking after me.
                I actually think i may have to share a little less on msw in future just so i can focus on me a bit more. It can be hard to be empathetic when i'm to busy feeling sorry for me at the moment anyway.
                I am sympathetic with being a grumpy old fart.
                I turned 50 yesterday. And I'm feeling more and more insecure about being useful . Grumble bum is me too.
                Each day there are sensations, fatigue etc that seem to be robbing me of who i am and i admit its easier to squirrel myself away and do very little because they lessen when i don't push things. This isn't fair to either my family or myself though.
                I just can't seem to get up any enthusiasm for lifes slippery slide either . It's all downhill, in shadows and very few pretty lights that i can see either.

                I had hoped that Lemtrada would help you.
                I know it was a hard choice especially with your other health problems.
                I am biding my time with Tysabri for a bit longer. The risk of ITP for me and the 48 months gap before being able to try other treatments gave me pause.
                I am considering trying Ocrevus when it's available in Aus.
                I will talk to doc about it at apt in June.

                The weather has been much better lately thank goodness.
                I hope it gives you some relief too .
                Wishing you well,

                But even with all the things available (now) some times (most) I wonder if it wouldn't be easier to just not do anything instead of continually worrying about apts and meds etc and let nature take it's course.


                  Absolutely. I was dx'd 2008, but I can trace this back to when I was a teen around the late '70s. I had a few episodes that lasted a short time then but now am having issues related to those episodes. The neuro I saw as a second opinion told me 'once the damage is done, it's done'. Not encouraging, but he wasn't going sugar-coat. And I didn't want him to. I don't have those episodes anymore, but I get progressively worse.

                  Yes, it's tough. And I know some don't have the support I have. I consider myself extremely fortunate.


                    Hi Caroline I donk know if the treatment has helped or not, all the symptoms I'm getting I feel like they are "old problems" no new symptoms and yes I will go in for my next dose I am still positive that this will benefit me, and happy birthday Craig


                      Thanks Craig Never thought i'd be around this long so i should be CELEBRATING big time.
                      Its a shame i don't have the energy

                      Hopefully the Lemtrada will slow progression like its meant to and it would be nice to have a reduction in symptoms for you too- we can always hope.

                      I've been trying a multitude of supplements last year supposed to be helpful in some way to ms patients (something i had never done previously) and i also did the fast mimicking diet and then went on to eating Mediterranean only. I have let all this slide quite a bit since Jan but i must admit i think it helped with overall health and physical coping. Have you ever tried anything like this?
                      My sister has bad kidneys and she can't take ANY supplements- I thought i remembered you had kidney issues too- is this a problem for you?

                      Unfortunately there are probably a lot of shoulda, woulda, coulda things we can try but it does mean its something else to keep track of and pay for as well and thats probably why i've gotten slack with things.

                      Ahh well like the song says - life goes on long after the will to LIVE is gone...

                      Its still nice to hear from you craig and i wish you well.