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Has anyone's vision recovered without treatment?

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    Has anyone's vision recovered without treatment?

    Hello. A few weeks ago I completely lost vision in my right eye during an ON attack. I am wondering if anyone has had their vision come back after ON without steroid treatment. I am beginning to get scared and my neurologist does not sound hopeful.
    Holly

    Ain't lost yet, so I gotta be a winner.
    - The Replacements

    #2
    Hi Holly,

    I had ON in my left eye, had blind spots and it scared me to death. I did not have steroids and my vision started coming back gradually after two weeks. I have not had ON since.

    I'm sorry about your vision and I hope it comes back soon.
    God Bless Us All

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      #3
      Hi Holly:

      Fifteen years of the Optic Neuritis Treatment Trial (ONTT) showed that steroid treatment makes no difference in the final outcome of optic neuritis due to MS. The final outcome is the same whether treated or untreated.

      Steroid treatment only speeds up the recovery time -- it doesn't make the recovery any better, despite what people on message boards say and in spite of what some neurologists tell their patients .

      The ONTT showed that most people get most of their vision back after optic neuritis, whether treated or untreated. So, to answer your question in the medically proven sense, YES, most people get most of their vision back even without steroid treatment.

      Unfortunately, some people don't get much or any of their vision back after optic neuritis, and that can include people who were treated with steroids. Steroid treatment does not guarantee visual recovery.

      Some people have mild cases of optic neuritis and recover vision in as little as a week. That's quite an exception. I have had many, many cases of optic neuritis and I never start to see any improvement before about three weeks, and what I do get back takes six to eight weeks. My worst episode took a year to recover.

      I'm going to throw this in right now. Your neurologist is NOT the person who should be following your vision. Neurologists aren't trained or equipped to examine or diagnose eyes or vision. They don't know how to properly document vision or eye health. (Their medical records when it comes to eyes and optic neuritis are quite inadequate.) Did you have a visual field exam, a full eye exam, contrast sensitivity and color testing, and at least pinhole vision testing if not a complete refraction? I'm betting not, because neurologists don't know how to do that and aren't equipped to do that, all to your detriment.

      If you haven't been evaluated by an ophthalmologist, you should be. Seeing an ophthalmologist won't make any difference to your recovery now, but can be helpful in getting you properly examined and documented, and possibly treated quickly if you should have another episode of optic neuritis. Your neurologist may not be hopeful about your visual recovery, but then your neurologist isn't an eye and vision expert, either. Proper exam, treatment and documentation may come in handy later, and your neurologist isn't the right professional to do that.

      It's realistic to expect up to six months to pass before visual recovery, not just "a few weeks." After that, recovery is less likely to happen, but still can.

      Not being treated with steroids might mean that your recovery will be slower, but it doesn't make any difference to your final recovery. With steroids, you might have had faster recovery, but there's no guarantee that it would be a better recovery. Remember, 15 years of the ONTT says that it wouldn't be.

      It is what it is. You didn't miss the chance of a lifetime to save your vision because you didn't have steroids. It wouldn't have made any difference anyway. Your vision might come back, it might not. If you don't get recovery, it's not because you weren't treated with steroids. Your outcome would still be the same, maybe only a bit sooner.

      The hard part for you now is to hope for the best but accept what is, and try to move on no matter what happens. But, if you fit the typical pattern, you may get most of your vision back, given enough time. I hope that happens.

      Comment


        #4
        Originally posted by jreagan70 View Post
        Hi Holly:
        Did you have a visual field exam, a full eye exam, contrast sensitivity and color testing, and at least pinhole vision testing if not a complete refraction? I'm betting not, because neurologists don't know how to do that and aren't equipped to do that, all to your detriment.
        Then you'd lose that bet. This ain't my first rodeo.

        While I truly thank you for the helpful info on ONTT, I do not particularly appreciate what frankly felt like a tongue-lashing based on your incorrect assumptions of how my care is being managed and by whom. Please back off.
        Holly

        Ain't lost yet, so I gotta be a winner.
        - The Replacements

        Comment


          #5
          Originally posted by REG53 View Post
          Hi Holly,

          I had ON in my left eye, had blind spots and it scared me to death. I did not have steroids and my vision started coming back gradually after two weeks. I have not had ON since.

          I'm sorry about your vision and I hope it comes back soon.
          Thank you! That is very encouraging. My previous episodes of ON all began to resolve after one week so this one threw me for a loop.
          Holly

          Ain't lost yet, so I gotta be a winner.
          - The Replacements

          Comment


            #6
            UPDATE

            The vision in my right eye has mostly recovered. Yay. Colors are a bit wonky though, grayer than usual.

            The weird part: I have synesthesia and am able to taste colors. Since I am seeing colors differently with my right eye than I do my left, winking with alternating eyes while looking at something colorful elicits a different taste for each eye. I've been amusing myself with this all day. Who knew MS could be so much fun?
            Holly

            Ain't lost yet, so I gotta be a winner.
            - The Replacements

            Comment


              #7
              Holly -

              A late response here...

              jreagan70 is generally correct. My intro to MS was ON in my right eye.

              In 1988. Anyway, I ended up in the hospital at the Kresge Eye Institute in Detroit (Wayne State hospital) in the just started ONTT for 3 days of super dosing with steroids. Well, the vision didn't really improve and all I got was 20 pounds heavier. The trials had just started and I was one of the first in the trials. My number was 00003. There was a little less than 500 people in the trial as I recall and it only ran for a couple years (papers were published on it for a very long time). It wasn't for MS, it was for ON.

              The eye did eventually clear up after about 6 months and my eyesight has been about 95% of what it was before ON for the last 28 years. Still a tad fuzzy but nothing significant. That 240 mg of steroids every 6 hours was a nice buzz though...

              My right eye optic nerve still has a "haze" around it so the evidence never went away. Every time I get a new eye doctor I challenge him/her to guess which eye - they always get it right.

              That was my only event with ON. There really is no mistaking ON with other temporary vision problems.

              Tom
              "Doubt is not a pleasant condition, but certainty is an absurd one."
              - Voltaire

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