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    Brain Atrophy -Causing Dementia like symptoms

    Have felt like confused little old lady for years now- getting worse probably daily now.
    On Tysabri 5yrs.

    Had dr apt early June and he has said i have significant Brain atrophy showing on my mri's especially over the last 18 months and this is causing aged dementia like symptoms.
    Scared the crap out of me! have been raising my memory/cog problems with dr's for ages but no one seemed overly concerned about it (but me) now it's been recommended to me that i step up treatment to Lemtrada to reduce the inflammation associated with brain atrophy and hopefully lessen future symptoms.
    Never had Brain atrophy mentioned before.

    Had MS for over 30 years and many mri's.
    Just kept hearing 'no new lesions', only small changes' or 'no change' in mri.

    Apparently (Dr said) they are paying more attention to brain atrophy now than in the past as a contributor of ms symptoms. Has any one else heard this?
    Lemtrada is a third line drug and has serious side effects so I'm looking very carefully into all aspects.
    Another thing that i have raised constantly with Dr's over the years is how hormone stabilisation has also stabilised my symptoms and vice versa.

    I am either going through or passed through menopause at this time (waiting on blood tests,had hysterectomy) so once again have raised the possibility that this could have been a catalyst to progression.
    Told again- only 'known' catalyst is pregnancy.
    HRT specialist explained to me that some women (without ms) experience dementia like symptoms and this can be helped with HRT .
    While this won't do anything for the atrophy i feel it's worth a look as it may be two things contributing to my memory issues not just the atrophy.

    I have a post with queries and more info in the Medications- Lemtrada board, sorry but can't remember enough to post all here. But feel is relevant to both topics.
    Would appreciate any feedback. Am feeling pretty overwhelmed at present.

    Have had my concerns fobbed of so often and for so long that to have a cause (or possibly 2)of them sudden confirmed and then told that serious attention and treatment needs to be given asap to slow down has been quite distressing- like the runaround most of us experience with ms diagnosis all over again!

    Have others had much experience with Brain atrophy? Treatments for it?

    Has anyone experienced worsening of cog fog or other symptoms with hormonal fluctuations?

    Was any relief experienced by moderating hormonal levels in any way?

    Has anyone been specifically prescribed a treatment for atrophy and memory loss etc and not ms in general?

    Thanks n all the best.

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
    Last edited by Mamabug; 09-15-2016, 05:18 PM.

    #2
    my experience

    I am post menopausal. Would be going through menopause, but, had a hysterectomy.

    I have had some cognitive decline. I do not have atrophy, yet. For the most part my cognitive decline is not easily perceived. I was working on my Masters when I stopped working. So, for the average person, it is not picke up. But, I am not there mentally, like I used to be. Neuro recently said I could walk circles around many (mentally.) Then I come home and leave my keys in the van with the van running, until son came home and asked me why the van is running.

    Even though there is some theory regarding HRT, I think the complications of blood clots with stroke or heart issues far out weight what possible benefits you might get. But, discuss it with your neuro. But, that is probably where they are going to go with that.

    Have you tried any medications other then Tysabri? Such as Tecfidera or Gylenia? I would want to try them before I endure the side effects of Lemtrada. But, you have to make that decision.

    Have you done anything in regards to diet? Or suppliments? I started out with Acety-L-Carnitine and alpha lipoic acid at first. I then did CoQ10. And, I noticed a significant improvement (not where I used to be, but, much better then I had been.) I then actually tried the Whal protocol diet that I had been resistant to until I had some issues with milk, and decided to read it and then follow it. It has made some good results.
    God Bless and have a good day, Mary

    Comment


      #3
      Hi Mary.
      Thanks for feedback. And I have to say MS world has gotten so quick with posts. I didn't even expect to see mine up but to already have a reply -in the same day- is so great.

      I'm having problems in most memory categories especially declarative, recent and proceedural memory. I've done the leaving car running too .As well as many others.

      I'm concerned about the clots etc with hrt but at the moment I'm more scared of losing the plot - so to speak, so I'm checking out everything. The hardest thing is retaining and sorting through all the info. It's a bit like crashing for a big exam while sedated.

      I took Betaferon years ago (changed name now) and the side effects were worse than the ms.
      My Neuro gave me the choice 5 yrs ago between Gylenia and Tysabri so I think he considers them very similar in regards to results.I haven't tried any of the other treatments.
      He seemed quite concerned about the significance of atrophy that he can see has changed in a relatively short time so he was quite adamant that 'stepping up' treatment to a more aggressive one was my best option for slowing things down.

      I do take some supplements that have shown results with some of my symptoms . But to be honest up until recently i've pretty much just got on with life as much as possible (and it's been fairly chaotic) for most of the time(relapses excluded) ms hasn't impacted really badly on me .
      NOW -Although most people wouldn't know i have ms visually - the daily mental struggles, weakness and fatigue are getting harder to cope with so I've been forced to ease off in regards to work and stress and activity so I now have the time to do research i probably should have done long ago. i just hope i can make sense of it all.Thanks for supplement info - will add to my list.

      For the same reasons i haven't gotten into complicated diets -until now.
      I've begun researching and have tried to eliminate problem foods and increased foods that most think beneficial while i clarify the best one to commit to.

      Thanks n all the best.

      Comment


        #4
        Originally posted by Carolinemf View Post
        Never had Brain atrophy mentioned before.
        Had MS for over 30 years and many mri's.
        Just kept hearing 'no new lesions', only small changes' or 'no change' in mri.
        Apparently (Dr said) they are paying more attention to brain atrophy now than in the past as a contributor of ms symptoms. Has any one else heard this?
        Hi Carolinemf

        Yes, improved MRI technology has shown that brain atrophy can now be detected early in patients with MS symptoms, sometimes even before they're officially diagnosed, and before lesions are visible.

        They used to think that the cause of MS brain atrophy was due to lesion damage in the white matter of the brain, but the advanced MRI technology has recently discovered that there may also be gray matter damage going on in the background, independent of the visible lesions detected on conventional MRI's.

        Researchers are now recognizing that visible lesions aren't the only markers of MS damage or atrophy.

        In any case, sorry that you are struggling with the cognitive issues, and sincerely hope you find something that will help.

        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
          Hi koko,
          It is interesting that if i search for 'MS' info, as a general rule it's lesions and symptoms that are described - in detail- I have to search MS and brain atrophy to get any mention of this part of MS.

          I am still weighing up options and need to discuss in more detail with Dr.

          Lemtrada has been recommended to me to address atrophy and cognitive function problems but I have just read a study that states that the ONLY treatment that has shown efficacy in preventing these in SPMS is Avonex after 2 yrs treatment. Unfortunately immunomodulatory therapy can transiently cause atrophy (whole brain not grey matter). Will ask for feed back re- Avonex users.
          Most info I have found does reflect that more importance is now being placed on the atrophy associated with ms than previously as Dr said.
          Thanks for support/comments and sorry about long winded posts can't seem to get my head around some of the abbreviations often used (and makes things take longer to keep looking up)
          so if i type out abbreviated at least spell check can help.
          Thanks n all the best.

          Comment


            #6
            Hi Carolinemf

            Originally posted by Carolinemf View Post
            It is interesting that if i search for 'MS' info, as a general rule it's lesions and symptoms that are described - in detail- I have to search MS and brain atrophy to get any mention of this part of MS.
            I think that's because the brain atrophy aspect of the MS disease process is more recent and ongoing due to the advances in MRI technology, and the researchers are currently still learning more and more.

            Originally posted by Carolinemf View Post
            Thanks for support/comments and sorry about long winded posts can't seem to get my head around some of the abbreviations often used (and makes things take longer to keep looking up) so if i type out abbreviated at least spell check can help.
            Thanks n all the best.
            Your posts are just fine, not to worry.

            Also, have you come across this article from the AJNR (American Journal of Neuroradiology)?

            http://ajnrdigest.org/brain-atrophy-multiple-sclerosis/

            This info from the article says a lot, in my opinion:

            Regional analysis of brain volume has clinical implications related to disease progression. Gray matter (GM) tissue loss is of particular importance in MS because GM makes up more than half the total brain parenchyma, and damage to this tissue is a large component of the overall MS disease burden.

            Moreover GM atrophy reflects the disease subtype, disability, and neuropsychological impairment to a greater extent than white matter (WM) atrophy or focal T2 lesion load, indicating that GM atrophy is a clinically relevant marker of disease progression.

            Unfortunately, assessment of cortical and deep GM volume, though likely to be more clinically relevant, is technically more demanding and less robust than whole-brain volume assessment, and more difficult to implement in longitudinal clinical studies.


            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


              #7
              Hi again koko,
              Thanks for the link. I have read more about MS in the last 3 weeks than in the last 30 yrs put together.
              What I read was interesting. but unfortunately there is nothing in any studies or reports that I have read so far that have any real comparative info to do with treatments that have resulted in improvements in atrophy and cognitive function. Only the one i have previously mentioned gives comparative info between different treatments and their efficacy in these areas. unfortunately it is fairly old and the results have probably been superseded now.

              I was hoping to be able to make an informed decision about whether Lemtrada is the best option for me to use to slow them down, but it does seem as though the lack of conclusive evidence of improvement in the symptoms i am most concerned with may mean I have to just put faith in my Dr's opinion and give something(Lemtrada) a go and HOPE it produces the desired outcome. Of course this is probably because it hasn't been used for MS for that long.

              I will continue doing research but I will have to make a decision soon as it is only 3 weeks till my next Tysabri apt , if it has to be cancelled. And I still have to skype with my Dr after he has the results of all my preliminary tests.

              My main concern is that if I start Lemtrada I'm committing to it and will be unable to take any other treatments for 5 years minimum. + side effects. And Trying to get my head around the consequences if it doesn't improve things. At least the current evidence shows it should improve my other symptoms.

              Have also just gotten hormone tests back. Apparently I'm smack in the middle of menopause. I have been referred to gyno for consult re HRT. Alzheimer's like symptoms are also very common due to this. Though I think this may be making my memory worse , my research shows I'm having the most trouble in different memory categories to those affected by hormones. So it is more than likely MS is the main culprit.

              I have started the fast mimicking diet and will be interested in seeing if it helps and begun taking some additional supplements.

              Still worried that I might lose the plot early but I am probably over the initial shock of how concerned Dr was about my progression in the last couple years and am settling in to my 'new normal' as others have said.
              Really appreciate the support and info.
              All the best

              Comment


                #8
                Carolinemf

                Recent article in Multiple Sclerosis News Today - Brain Atrophy in MS Patients May Soon Be More Easily and Routinely Examined.

                https://multiplesclerosisnewstoday.c...be-on-the-way/

                Thought you might be interested. It's not very long.

                In any case, hope you're doing well!

                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


                  #9
                  Carolinemf

                  I am SPMS with relapses. My neuro has me on 80mg of simvastatin (Rx only) to help with brain atrophy. HOWEVER, this med is off label, and quite a few people on this board are against any form of statins due to possible serious side effects.

                  As of yet, I have not had any adverse side effects or any side effects for that matter. I and my neuro stay in touch frequently to monitor my reaction to this medication. I take it at bedtime. My doc says it works better while you are sleeping. I also take 200mg of CoQ10 twice a day.

                  Here are a couple of links regarding MS research and simvastatin.

                  https://www.mssociety.org.uk/ms-rese...ne/simvastatin

                  https://multiplesclerosisnewstoday.c...rsial-results/

                  http://www.ncbi.nlm.nih.gov/pubmed/25795002

                  http://www.thelancet.com/journals/la...242-4/abstract

                  You can also Google simvastatin and multiple sclerosis and/or simvastatin side effects to find more information.

                  I sure hope you find some answers soon!
                  Echo
                  DX 2007 Started Ocrevus on 2/14/2018

                  "Some where over the rainbow...."

                  Comment


                    #10
                    Hi Echo 2099,
                    Thanks for the info and reply in general.
                    I am taking Co q10 as part of my new supplement regime. but only 200mg a day.
                    I will increase to twice a day.

                    At this stage I haven't notice any significant improvement with my cognitive function, but taking the supplements and the fast mimicking diet (I am only eating Mediterranean type foods as well) I do feel a bit PHYSICALLY better. And I haven't found these changes to hard to do. It can be a bit mentally exhausting to remember everything, especially initially, but it's getting easier.
                    To be supportive my husband has been eating the same food as me , without the fasting though, and he has lost some weight which he is happy about.
                    All the best.

                    Comment


                      #11
                      Originally posted by Carolinemf View Post
                      Hi Echo 2099,
                      Thanks for the info and reply in general.
                      I am taking Co q10 as part of my new supplement regime. but only 200mg a day.
                      I will increase to twice a day.
                      Carolinemf

                      Glad to hear your husband is supporting your efforts to be more healthy! We both are lucky to have such supportive husbands!

                      Please consider checking with your doctor before changing any meds, even vitamins. What is ok for me, may not be ok for you. With all the differences in our bodies and the meds we take, it's better to be safe than sorry.

                      I hope you continue to feel better!
                      Echo
                      DX 2007 Started Ocrevus on 2/14/2018

                      "Some where over the rainbow...."

                      Comment


                        #12
                        Hi carolinemf,

                        I found this thread and was curious about how your neurologist is quantifying your brain atrophy.

                        I had a conversation with my neurologist on this as I was concerned, as my MRIs are stable, but my memory is worse. I have also left the car running, among many other embarrassing snafus...

                        My neurologist said that brain atrophy is hard to quantify with current MRI technology. That once there is a more three dimensional view, then brain volume can be truly assessed.

                        So I am wondering now if my doc is downplaying my concern. So knowing what your doc is looking at will help me in my next discussion.

                        Glad that you are taking your time and researching options, considering other causes and lifestyle changes.

                        Thanks for your help and good luck.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Hi everyone thanks for the replys.
                          Been off line for a while so sorry about the delay in reading recent posts.

                          My neuro has basically compared all the mri's for the last 4 years and shrinkage is visible between each one. (I can see this myself).He mostly did this after i expressed my concerns regarding memory and cognition and because there haven't been any significant changes in regard to lesions so he started looking for other contributing factors.

                          Had a follow up apt on 13 Dec and one quite large lesion has almost disappeared- neuro did a bit of a double take over that one.

                          The option for me to start Lemtrada is still on the table but I'm going to persevere with the HRT and supplements and Tysarbri for a while longer.

                          I am still feeling 'not too bad' physically. With the main difference being the improvement in joint pain from taking Evening primrose oil - I can't recommend this supplement enough!

                          The memory and cognition hasn't shown any real improvement and neither has the fatigue, weird symptoms etc. These have probably gotten worse actually (not good but to be expected)
                          and he has also recommended that i consult a haematologist regarding ITP as my average blood count is below the normal range already - I would probably need a transfusion to take Lemtrada.

                          I had trouble finding any study that mentions a treatment that shows an improvement in brain atrophy and/or cognition so I asked my neuro to email me the info regarding Lemtrada that he says details just that. So now i wait till after xmas.

                          I have considered the stem cell treatment and have read up on it a bit. I'm not sure it is available in AUS yet. If it was I would be very interested in trying it.

                          Again - All the best and thanks for the feedback.

                          Comment


                            #14
                            Carolinemf

                            I had an appointment with my neuro a couple of weeks ago. I asked him about brain atrophy. He said it is difficult to measure because the size of the brain on a MRI can be influenced by how well you are hydrated. He also said to have more accurate estimation, MRIs should be taken on the same machine and as close to the same time of day as possible.

                            Sounds like a lot of variables can effect brain size.
                            Echo
                            DX 2007 Started Ocrevus on 2/14/2018

                            "Some where over the rainbow...."

                            Comment


                              #15
                              Originally posted by Echo2099 View Post
                              Carolinemf

                              I had an appointment with my neuro a couple of weeks ago. I asked him about brain atrophy. He said it is difficult to measure because the size of the brain on a MRI can be influenced by how well you are hydrated. He also said to have more accurate estimation, MRIs should be taken on the same machine and as close to the same time of day as possible.

                              Sounds like a lot of variables can effect brain size.
                              Thanks for posting. My neuro said similar and that you can't tell volume by current MRI. Feel better reading this that he wasn't just trying to shield me from bad news or something!
                              Kathy
                              DX 01/06, currently on Tysabri

                              Comment

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