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How often/how many times have you had ON?

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    How often/how many times have you had ON?

    I am having what I could call recurrent ON, and can find data about that phenomenon, but not what is actually meant by recurrent. How often, mow many times, etc.--I can't seem to find info on what is statistically normal for someone with MS. (If you have links, I would love them!)

    I have an appointment with the neuro-ophthalmologist in a few weeks, and I will be asking her, of course. In the meantime, for those of you who get ON, how often do you get it?

    Me:

    Jan 2007 onset of MS, misdiagnosed
    Nov 2011
    June-ish 2013
    Nov 2013 bilateral, much worse in right eye
    March 2013 bilateral, much worse in right eye
    April 2013

    I mostly get it in my right eye, but even before the bilateral events showed extensive atrophy to the optic disc in my left eye, so I've clearly had it subclinically at least once, probably more. I also suspect I've had at least 4 or 5 more mild bouts of ON that I can recognize in hindsight, but can't really confirm, most of which in the past two years.

    How about you guys? How often do you get ON? How many times have you had it? I know we're all our own little anecdotes, but I am curious and would love your input.


    #2
    I have had ON on the left side at least 8-9 times confirmed by the optic neuropathy in that eye on MRI, also about 5 times in the right eye also as evidenced by MRI. I also had symptoms each time. But, I was diagnosed by a VEP each time, an MRI, and clinically.

    I hope you feel better soon! Whatever happens your visit with the neuro-ophthalmologist will be very helpful! Let us know how it goes, OK?

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

    Comment


      #3
      I'm not glad to hear that you have had so much ON, but it is reassuring to hear that other people also seem to get it over and over again, if that makes any sense.

      I'm hoping the neuro-ophth has some good answers, because this many times in the last year is really taking a toll on my vision. I guess that's the "fun" of MS.

      Comment


        #4
        Originally posted by Alicious View Post
        I am having what I could call recurrent ON, and can find data about that phenomenon, but not what is actually meant by recurrent. How often, mow many times, etc.--I can't seem to find info on what is statistically normal for someone with MS. (If you have links, I would love them!)

        I have an appointment with the neuro-ophthalmologist in a few weeks, and I will be asking her, of course. In the meantime, for those of you who get ON, how often do you get it?

        Me:

        Jan 2007 onset of MS, misdiagnosed
        Nov 2011
        June-ish 2013
        Nov 2013 bilateral, much worse in right eye
        March 2013 bilateral, much worse in right eye
        April 2013

        I mostly get it in my right eye, but even before the bilateral events showed extensive atrophy to the optic disc in my left eye, so I've clearly had it subclinically at least once, probably more. I also suspect I've had at least 4 or 5 more mild bouts of ON that I can recognize in hindsight, but can't really confirm, most of which in the past two years.

        How about you guys? How often do you get ON? How many times have you had it? I know we're all our own little anecdotes, but I am curious and would love your input.
        Hi..Hope all is well with u..My daughter had 3episodes of ON; 1st in Oct 2013; 2nd after steroid withdrawal after1 mth; 3rd in april 2014; & maybe a few subclinical??; so its very variable

        Comment


          #5
          Oh, man! The poor girl. I hope they can find a way to get it to stop.

          Comment


            #6
            I have had at least 5 episodes of ON in one or the other eye, or bilateral over the 10 years of my diagnosis. Most of mine is retrobulbar so it can't be seen by looking in the back of my eye. However, I get the unequeal pupils and my blind spots show up on testing that I can't think of the name of right now.
            Like you say, I have probably had more subclinical episodes. I have optic nerve atrophy in both eyes, left greater than right on all of my MRIs. It steadily gets worse.

            I have found there is nothing really I can do about it. IVSM is the only thing that shortens an attack. I just try to recognize it and call the ophthalmologist ASAP.

            I hope you feel better soon!
            Take care
            Lisa
            Disabled RN with MS for 14 years
            SPMS EDSS 7.5 Wheelchair (but a racing one)
            Tysabri

            Comment


              #7
              My new neuro, an MS specialist, wants me to switch to Rituxan to control it as nothing else has worked. There is debate as to whether or not I have an NMOSD or MS with NMO characteristics, and it treats both. (He said they now know MS and NMO are actually like a Venn diagram, and the overlap are NMOSDs. I had no idea that was the new understanding, I thought it was one or the other, full stop.) The neuro-ophth (same hospital) was horrified by the amount of retinal nerve fiber layer I've lost in the past 2.5 years, all with ophthalmologists telling me it wasn't ON. But it was.

              Comment


                #8
                Only once, in 1985, and it lasted about 3 weeks. I was not offered steroids, don't know if they even did that back then. My vision returned to normal.

                Comment


                  #9
                  I've had too many to count episodes of ON in rt eye, during 5yrs of active MS exacerbations.

                  ON coincided within 5-7 days before my monthly period. Although it wasn't every month, when I had an episode of ON, I knew my period was soon to follow.

                  I'm luck, as far as I know my only residual damage is a pale optic nerve, dx'ed years later by a Neuro opth.

                  I had approximately a 3 week episode of diplopia years later that coincided with full time MS and a MS dx.

                  Comment


                    #10
                    I have had it 4 times in 2 years. I've also have uvuletis (sp?) three times. My eye issues are my least favorite part of the whole ms "experience".
                    Diagnosed: June 25, 2014
                    Currently on Copaxone

                    Comment


                      #11
                      Rituxan opinion on response of O.N.

                      Originally posted by Alicious View Post
                      My new neuro, an MS specialist, wants me to switch to Rituxan to control it as nothing else has worked. There is debate as to whether or not I have an NMOSD or MS with NMO characteristics, and it treats both. (He said they now know MS and NMO are actually like a Venn diagram, and the overlap are NMOSDs. I had no idea that was the new understanding, I thought it was one or the other, full stop.) The neuro-ophth (same hospital) was horrified by the amount of retinal nerve fiber layer I've lost in the past 2.5 years, all with ophthalmologists telling me it wasn't ON. But it was.

                      I wanted opinion of Rituxan , in respect to its effect on O.N.
                      This is because, my daughter, who is currently on Prednisone & Mycophenolate, and is O.k.clinically, apart from minor complaints,
                      maybe will be considered for Rituxan, as Mycophenolate may not be acting well, as she needs steroids to be off complaints.

                      Comment

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