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How do you cope with the long term effects of optic neuritis?

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    How do you cope with the long term effects of optic neuritis?

    Hi everyone,

    My most recent flare gave me optic neuritis in my left eye (among other things). I was treated with IV steroids but they did not help my vision improve at all. It has been almost a month since my flare, and while I am hopeful my vision will still improve to some extent, I am expecting there will be lasting residual vision defects.

    My peripheral vision is affected - what I see is as if you were rolling your left eye around in circles and never stop. My vision is distorted and I am so uncomfortable. I feel like the room is spinning at all times which makes daily tasks and work almost impossible. If I put my hand up cut off my peripheral vision I find some relief. My question is if anyone has had similar symptoms from their optic neuritis. Secondly, is there anything I can do to make my vision more tolerable? I just want some sort of visual device, prism, or glasses to help me make it through the day. I am not asking for 20/20 vision, I just want some relief. Has anyone done vision rehabilitation and has that helped? I have seen an ophthalmologist who confirmed the ON, but would it help to see a neuro-opthamologist?

    Thanks in advance for your responses. Any insight at all would be extremely helpful - even if you haven't been through the exact situation. Just sitting here typing makes me miserable - I need to find a way to live with this!

    #2
    Time really does help

    Hi, there- I just wanted to respond and let you know that time really does help. My initial onset symptom for MS was Optic Neuritis. That was 2 1/2 years ago. I did the steroid treatment, which I really didn't notice any improvement from. Over time, though, things have just slowly improved. I still can't focus well on a moving object, but I have adapted. My depth perception isn't what it was, but it isn't horrible either. I wish I could give you pointers to help you through, but I can't. All I can give you is assurance that it does improve, with time.
    ~ Marie
    Initial symptoms - March 2014
    Diagnosis - June 2014

    Comment


      #3
      Hi Marie,

      Thank you so much for your response! I appreciate you taking the time to reach out. I am so happy to hear that things improved for you over time. I hope the same will happen for me! It is so hard to wait and not know what is going to happen. It's also hard to imagine that I will ever adapt to this if it remains permanent, so it is encouraging to hear that you were able to adjust to your new normal.

      I hope today finds you well. Thanks again!

      Comment


        #4
        Vision therapy

        I worked in OT, and I worked a lot with one that specialized in working with visual impairment, such as your talking about. I watched her do a lot of the treatments and went to more cont ed to continue using to some extent only, as I was not specialized.

        That being said, the OTs that specialize in this, work with optometrists, and not ophthalmologist. It can be difficult to find someone who does this. Some of the OTs that have trained with an optometrist specializing in retraining visual deficits, can know more than an optometrist period (in regards to this topic), if they themselves have not specialized.

        Do some research and see if you have access to the treatment you need. I wish you much luck with this, and may God bless.

        Comment


          #5
          Ongoing issues

          My optic neuritis, both blurred and double vision, has not stopped for over 12 years now. I have prisms in the lenses of my glasses that keeps the double vision in check but the blurred vision often makes it difficult to read and do my job. I am trying to get through 3 more years of work and then retire at partial SS.

          Comment


            #6
            Originally posted by bjrnewlife2013 View Post
            My optic neuritis, both blurred and double vision, has not stopped for over 12 years now. I have prisms in the lenses of my glasses that keeps the double vision in check but the blurred vision often makes it difficult to read and do my job. I am trying to get through 3 more years of work and then retire at partial SS.
            Thanks for your responses bjrnewlife and texasblue.

            Texasblue- I have made some phone calls to determine if I qualify for specialized OT. I think that would really help. It certainly can't hurt!

            Bjrnewlife - I'm so sorry to hear you have issues with blurry vision and double vision. I can't imagine having both! I agree that vision issues really make reading and performing your job extremely difficult. Even if I made a career change (which I really don't want to do), I can't think of a single job that doesn't require the use of your vision. It feels very overwhelming to have to adapt to a new "normal." I hope the next three years go by quickly for you and you can enjoy a much deserved retirement!

            Comment


              #7
              I had optic neuritis in Dec. 2015, but I don't think it was my first time since I had the same pain before, however this was the only officially diagnosed time I had it.

              My vision did not improve. When I am inside the house I am okay except for random black dots that look like bugs in my peripheral vision plus blurriness (not constant).

              However, if I go outside my vision is pretty bad. I have a permanent black smudge in the lower right of my vision as well as floaters, white lines, and white orb looking things. I can't even look at the sky, even if it's not sunny. It hurts my eyes so much and I cant see it clearly. I just see so many white circles and moving white lines and it's like my eyes cant even focus.

              I help myself by constantly wearing dark sunglasses when outside during the day. I'm sure people think I'm strange wearing them even when it's cloudy, but it works. It helps a lot, even though the problems aren't totally gone.

              It's been about 9 months so my neuro said not to expect it to get better. I am really really sad about that. I am only 25, and since I don't believe this is my first case it will probably happen again. I am scared it will get worse from here.

              I hope yours improves. <3

              Comment


                #8
                Originally posted by Ashtastic View Post
                I had optic neuritis in Dec. 2015, but I don't think it was my first time since I had the same pain before, however this was the only officially diagnosed time I had it.

                My vision did not improve. When I am inside the house I am okay except for random black dots that look like bugs in my peripheral vision plus blurriness (not constant).

                However, if I go outside my vision is pretty bad. I have a permanent black smudge in the lower right of my vision as well as floaters, white lines, and white orb looking things. I can't even look at the sky, even if it's not sunny. It hurts my eyes so much and I cant see it clearly. I just see so many white circles and moving white lines and it's like my eyes cant even focus.

                I help myself by constantly wearing dark sunglasses when outside during the day. I'm sure people think I'm strange wearing them even when it's cloudy, but it works. It helps a lot, even though the problems aren't totally gone.

                It's been about 9 months so my neuro said not to expect it to get better. I am really really sad about that. I am only 25, and since I don't believe this is my first case it will probably happen again. I am scared it will get worse from here.

                I hope yours improves. <3
                Hi ashtastic,

                Thanks for responding. I am so sorry that you are facing permanent vision loss, especially at such a young age. That has to be incredibly scary. I am not much older than you and I know I have a lot of fear of the future. MS is truly such an awful disease.

                My vision is opposite of yours - it is worse when I am indoors and improves when I am outside. However, if I am in the sun or outside too long it is much worse when I come back indoors. Are you able to work and complete your daily tasks when you are indoors? Has your doctor offered you any solutions or does he/she just say it is something you have to adapt to? How frustrating!

                I hope this message finds you well and thanks again for your response!

                Comment


                  #9
                  During my first ON episode I lost close to 90% of vision in my right eye, over the course of several months I got the majority of it back. It settled in at about 15% loss easily adaptable. I didn't take anything for that one.

                  My second bout hit my left eye which my neuro thought was odd I don't know, but it took about 50% on left eye but settled in at about 5% loss after several months. The second time I was on Avonex but took no IVSM for it.

                  I might have had a 3rd time in my right eye but it may have been just a flare, either way my right eye is down to about 80% total vision while my left is about 95% still. So compared to some of the stories not too bad. Maybe you will get lucky like me and a few months will let your body heal most of the damage.

                  I still get occasional flares, especially as I work in the building trades and some days the heat is unbearable. I had one day a couple weeks ago that I had to pull the van over and just blast the AC for about 20 min. cause my vision was so bad I couldn't drive. Once I cooled off though all was good and back to my normal level. So there is hope, that 90% loss during the peek of the first episode was scary as heck and my neuro didn't make it better saying that "usually it improves somewhat but with this much vision loss I don't know how much you can expect to recover" Made me think I would be at 50% or less for life, my body showed him though!

                  The only thing that really bothers me now though is I have been wearing glasses since 3rd grade now I can't just go to an optometrist for my new prescription glasses, their little tests do poorly with getting the right prescription when neurological damage exists. After a couple of pairs of glasses that caused more vision issues than helped I started seeing a full blown ophthalmologist and he works with me to get them right. Extra money and my insurance gives me grief about it every time.
                  Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

                  Comment


                    #10
                    Originally posted by Maryjazzy1 View Post
                    Hi ashtastic,

                    Thanks for responding. I am so sorry that you are facing permanent vision loss, especially at such a young age. That has to be incredibly scary. I am not much older than you and I know I have a lot of fear of the future. MS is truly such an awful disease.

                    My vision is opposite of yours - it is worse when I am indoors and improves when I am outside. However, if I am in the sun or outside too long it is much worse when I come back indoors. Are you able to work and complete your daily tasks when you are indoors? Has your doctor offered you any solutions or does he/she just say it is something you have to adapt to? How frustrating!

                    I hope this message finds you well and thanks again for your response!
                    Oh, that is interesting that it is opposite for you. I guess I have a problem with natural light. If I open a big window I get the same problems. The problem happening when inside sounds even worse than mine. I'm glad I'm not someone who really enjoys the outdoors. I just feel like a vampire now. lol

                    My doctor did not offer me any kind of solution...I am in Japan though. I can speak decent Japanese but we still have a language barrier and MS is so rare here I feel like they don't know how to alleviate symptoms. I will be back in the US in a couple months though so hoping they will have more ideas, but I will see! My Japanese doctor just said "I don't think it will be improving".

                    I actually quit my job I was doing, which was teaching at elementary schools because that was hard to do with all these MS problems but I will be getting a computer desk type job when I get back to the US so hopefully that will be easier on me

                    Comment


                      #11
                      Originally posted by Ashtastic View Post
                      Oh, that is interesting that it is opposite for you. I guess I have a problem with natural light. If I open a big window I get the same problems. The problem happening when inside sounds even worse than mine. I'm glad I'm not someone who really enjoys the outdoors. I just feel like a vampire now. lol

                      My doctor did not offer me any kind of solution...I am in Japan though. I can speak decent Japanese but we still have a language barrier and MS is so rare here I feel like they don't know how to alleviate symptoms. I will be back in the US in a couple months though so hoping they will have more ideas, but I will see! My Japanese doctor just said "I don't think it will be improving".

                      I actually quit my job I was doing, which was teaching at elementary schools because that was hard to do with all these MS problems but I will be getting a computer desk type job when I get back to the US so hopefully that will be easier on me
                      Hi Ashtastic,

                      Sorry for my delayed response, I haven't checked this board in a little while. Thanks for responding! It has to be difficult for you to be in a foreign country dealing with a chronic illness. It is interesting that there is a lower prevalence of MS in Japan. I wonder if that has anything to do with diet and lifestyle.

                      I'm sorry to hear that you have had a difficult time maintaining employment due to your vision. I hope your new job makes things more tolerable for you. I have such a difficult time looking at a computer - that is about the most challenging thing for me.

                      I hope you are having a great day

                      Comment


                        #12
                        Originally posted by TaoWarrior View Post
                        During my first ON episode I lost close to 90% of vision in my right eye, over the course of several months I got the majority of it back. It settled in at about 15% loss easily adaptable. I didn't take anything for that one.

                        My second bout hit my left eye which my neuro thought was odd I don't know, but it took about 50% on left eye but settled in at about 5% loss after several months. The second time I was on Avonex but took no IVSM for it.

                        I might have had a 3rd time in my right eye but it may have been just a flare, either way my right eye is down to about 80% total vision while my left is about 95% still. So compared to some of the stories not too bad. Maybe you will get lucky like me and a few months will let your body heal most of the damage.

                        I still get occasional flares, especially as I work in the building trades and some days the heat is unbearable. I had one day a couple weeks ago that I had to pull the van over and just blast the AC for about 20 min. cause my vision was so bad I couldn't drive. Once I cooled off though all was good and back to my normal level. So there is hope, that 90% loss during the peek of the first episode was scary as heck and my neuro didn't make it better saying that "usually it improves somewhat but with this much vision loss I don't know how much you can expect to recover" Made me think I would be at 50% or less for life, my body showed him though!

                        The only thing that really bothers me now though is I have been wearing glasses since 3rd grade now I can't just go to an optometrist for my new prescription glasses, their little tests do poorly with getting the right prescription when neurological damage exists. After a couple of pairs of glasses that caused more vision issues than helped I started seeing a full blown ophthalmologist and he works with me to get them right. Extra money and my insurance gives me grief about it every time.
                        Hi,

                        Thanks for your response. I am glad your body was able to heal itself to some extent and that you were able to prove your doctor wrong! It just shows that doctors can't always predict the future! I hope this message finds you well!

                        Comment

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