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Permanent eye damage in MS

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    Permanent eye damage in MS

    Hi to all,

    My question/concern is about the possibility of permanent and irreversible eye damage in MS and has become a deep worry to me due to symptoms in the past three years: optic neuritic and nystagmus. I now have both symptoms and my vision has consequently become really bad. I cannot drive and have great difficulty reading. I am not on any DMDs but will be hopefully in the coming year and am praying this can help me and can perhaps reverse some of the existing damage.
    My great fear is that some eye damage is irreversible. Especially because I have transitioned to SPMS from RRMS, which seems to have occurred mid-2010. This distinction between RRMS and SPMS has been in my case very important, apparently, as Cortisone reversed my MS symptoms in RRMS (including a bout with double vision) but was ineffective when I tried it about a year ago. So I am very worried that I have waited too long too take a DMD such as Tysabri, as I have read on this forum of good results with Ty in SPMS.
    That was my motivation for starting this thread: I am wondering about the possibility of irreversible eye damage in SPMS and about the length of time one can go without a DMD without incurring irreversible eye damage? If anyone has experienced eye symptoms, especially in SPMS and could share, that I would appreciate very much.

    Cheers,
    ratsuchend

    #2
    Hi Ratsuchend: I am not SPMS, I am still RRMS, but I have permanent eye damage from ON in both eyes. I am also on Tysabri. It does not help nor will it ever help with the damage. The DMDs we have now do not repair damaged myelin. The next round might. Tysabri will help with keeping active lesions down and new lesions from forming. I know several people with SPMS on Tysabri and they say it has helped them a lot. So, in a sense I guess it will help in that way. It will hopefully keep you from getting more episodes of ON. So yes, Ty will help you prevent future damage.

    I also have nystagmus. In addition to another lesion that causes double vision that is permanent, so I have to wear prisms in my glasses. It is difficult to read, but the ON did the most damage. I can't get that back. I have optic nerve atrophy in both eyes as a result of having many episodes of ON. Now I, like you, am on my DMD just praying it works and doesn't allow any further damage.

    I wish you the very best in your journey. Ty is a great drug as long as you know the risks. I am sure you have gone over these with your neurologist.

    Let us know how it goes, OK?

    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment


      #3
      Originally posted by ratsuchend View Post
      I am wondering about the possibility of irreversible eye damage in SPMS and about the length of time one can go without a DMD without incurring irreversible eye damage?
      Eye damage doesn't depend on whether a person is RRMS or SPMS. It depends on how much damage was done during an attack. It only takes one attack to permanently take away vision.

      The last figure I read said that a bit more than 50% of people with MS will have at least one episode of optic neuritis. And while the Optic Neuritis Treatment Trial showed that most people get most of their vision back after an attack of ON, most people also have at least some residual deficit. That means that it is more likely than not that a person who has had at least one attack of ON will have some permanent loss of vision. So it's not that some permanent irreversible eye damage is possible, it's more that it's probable.

      Now the people who have never had ON - the bit less than 50% apparently - will be just shocked to read that and say it isn't possible because it has never happened to them! But that's what the statistics from the experts say. More likely than not for someone to have some kind of permanent effect on vision.

      And again the amount of eye damage doesn't depend on whether a person is RRMS or SPMS. I'm RRMS and I do have permanent irreversible eye damage from ON. I've been visually impaired for years. I've also had 2 episodes of double vision that cleared up. Neither of those had anything to do with whether I am RRMS or SPMS. It was all decided by when I had my attacks and how bad the damage was.

      How bad the permanent loss of vision is depends on the attack and the person. Very bad attacks can clear up virtually completely and others that were only sort of moderate might not ever get better. It can't be predicted.

      There is unfortunately no way to know the "length of time one can go without a DMD without incurring irreversible eye damage" because no one can predict the time line or severity of any one person's MS. The statistics show that people who take a DMD tend to do better in general than those who don't but that's no guarantee of what will happen to any one person. Like with anything else to do with MS some people don't take a DMD and do relatively well and others take every kind of medicine available and things still go badly for them.

      And taking a DMD is not associated with whether a person will specifically have an attack of ON or diplopia or nystagmus or whether the attack will leave permanent effects. DMD's don't prevent attacks in everyone so there is no way to know if they will prevent an attack of ON or whatever, let alone what will happen afterward.

      The statistics say that you should EXPECT some kind of permanent eye damage from MS over your lifetime, even if it's only a little bit. But those are just statistics and not what will happen to YOU. I know how nice it would be to be able to predict the future, but in the case of what you are asking it can't be done.

      I think that if you want to go with the odds of slowing MS and trying to prevent disability of some kind then you would do well to take a DMD. But you are not likely to reverse damage that has already happened. Nerves that are dead are dead.

      Some people who have been on Tysabri have been able to suppress their MS to the point that they healed enough to get some functions back. That's great for the people it happens to but that is not what you should expect from Tysabri or any DMD.

      So you can decide to take a DMD to try to slow future damage. Or not. But if you are looking for a cutoff that says that your MS and your vision will be fine right up until 5 o'clock even if you don't start a DMD but that's your deadline to start taking one to prevent your MS from getting worse then that won't happen. For some things it might already be too late and other things might never happen.

      Comment


        #4
        I lost the sight in my left eye with my first attack in 2005. I probably stood a chance of regaining it but had back to back (to back) attacks while on Rebif, which didn't work for me. The optic nerve got permanently damaged from repeated inflammation, it is no longer pink, but gray. The pupil is non-responsive to light.

        The right sees ok but everything is "dim". If in the right light, I can read the eye chart to the very bottom with it.

        I'm 48 and have never needed glasses, not even those drugstore magnifiers, so I'm not impressed! I hope you don't go through this.

        Jen
        RRMS 2005, Copaxone since 2007
        "I hope to be the person my dog thinks I am."

        Comment


          #5
          As previous posters have stated...it only takes one attack. Just one.

          I have had three bouts of ON, but no permanent damage and I am very grateful for that. However, a single attack took away my ability to run in 2005. I could not run 20 feet to save my life today.

          MS is very unpredictable. And you can still get irreversible damage with a DMD...so don't beat yourself up.
          Katie
          "Yep, I have MS, and it does have Me!"
          "My MS is a Journey for One."
          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

          Comment


            #6
            I was most surprised when the MS specialist told me she could see "scars" on my left eye from the one and only case of ON I had 15 years ago.
            Most of my dicky eyesight is down to getting older, but it is worse in that eye when I'm tired.

            Comment


              #7
              Originally posted by Thinkimjob View Post
              I was most surprised when the MS specialist told me she could see "scars" on my left eye from the one and only case of ON I had 15 years ago.
              Most of my dicky eyesight is down to getting older, but it is worse in that eye when I'm tired.
              Oh.....

              Just when my family was just getting use to me saying " bugger off", I think my new word is now going to be "dicky". My dicky left leg isn't working well today Mom.

              Think...you are absolutely a breath of fresh air.
              Katie
              "Yep, I have MS, and it does have Me!"
              "My MS is a Journey for One."
              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

              Comment


                #8
                Thanks

                Thanks to all for sharing your experience with eye damage and advice, etc. It helps me with getting a bearing on my own condition, choices of treatment and prospects of recovery.

                Currently I am participating in the ASCEND Tysabri trial for use in SPMS (in Germany). I strongly suspect I got the placebo, as I not seen any improvement whatsoever, only slow worsening of vision and of walking ability. When I return to Canada I must decide what couse to take in terms of treatment, as I can't bear my current condition. Your responses do help me with making this choice.

                Comment


                  #9
                  ratsuchend if time passing by without a DMD is a concern for you, is there some reason you don't just drop out of the study and have your neurologist put you on Tysabri so you know for sure that you are being treated?

                  Comment


                    #10
                    MSer102, I cannot be treated yet because I am in Germany for study purposes. I will certainly push for treatment with Tysabri once I return to Canada in a couple months (after getting through all the beaurocratic red tape regarding government funding). And yes, to be certain I really did get the med, and I realize it is possible that even if I got the Ty in the study, my body didn't react to it. Everyone's body is different and reacts differently to different meds. But yes, I'll definitely urge my neuro to put me on Ty once I get back, as it seems to be the MS treatment, on the whole, with the best results, despite the PML risk. And for me, the risk is worth taking.

                    Comment

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