Announcement

Collapse
No announcement yet.

Desperate for advice on optic neuritis

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Desperate for advice on optic neuritis

    Hi All,

    I am posting for my wife who has yet to have a positive diagnosis for MS, though her doctors believe she may indeed have it. For the sake of cutting through the clutter of our long and detailed story, I will break it down to bullet points:

    - Started having pain and vision loss in left eye 3 years ago.
    - Tested negative via spinal tap and MRI for MS, diagnosed with unexplained (possibly pre-MS) optic-neuritis and treated with intravenous steroids. The condition then went away.
    - For the next year and a half, she had sporadic flare ups that would generally go away in a few days, treated only with NSAID's.
    - About 18 months ago, began to have a more severe flare up, this time in her right eye, with nothing in her left eye.
    - Put back on oral steroids but the condition worsened.
    - Beginning a few months ago, noticed progressive loss of vision in her right eye, now she has lost most of her vision in that eye.
    - Has sought advice from a neurologist, a neuro opthamologist, and a rheumatologist. All have basically said they are at a loss for what could be causing this and are suggesting chemo-therapy, even without a diagnosis.

    At this point, we are both very afraid because although she has only lost vision in her right eye, this started in her left eye. She is terrified of going blind and we can't find any doctor to help us. Thankfully, money is not an issue for us and we just want the absolute best treatment available.

    If anyone on here can offer any experience or advice on what this might be or where we can go for treatment, I would be so grateful to you. I understand this forum is for people living with MS, but the doctors seem to think this could still be an early sign for her. We are at a loss here...

    #2
    I wish I could help. If they are giving your wife steroids, that means they think there's inflammation going on.
    Has she had another MRI? Things may have changed by now.

    Comment


      #3
      Hi ryanatx:
      I’ve had recurrent optic neuritis for 24 years and I’ve learned quite a lot along the way.

      ON is most commonly associated with MS. But when there are no other signs or symptoms of MS and a person develops recurrent and severe ON, everybody has to stop thinking MS, and the treatments become very different.
      You posted some of the information that’s expected when looking for MS. But you didn’t post any other information about tests that might have been done in looking for other conditions.

      When my ON first started, I was extremely fortunate to see a neuro-ophthalmologist who recognized that what I had wasn’t acting like MS. He referred me to a rheumatologist who put me on immunosuppressants. I credit those doctors with starting me on a path that preserved my vision for many years. It was when I then developed spinal cord symptoms that I got referred to a neurologist and spent 4 years with doctors who were undereducated and completely unqualified to handle my case. I was MISdiagnosed with MS, much to the detriment of my vision.

      The Optic Neuritis Treatment Trial found that test subjects who had ON but clear brain MRIs had only about a 22% chance of going on to develop clinically definite MS over the next 10 years. Your wife has already had several episodes of ON, so the statistics about MS aren’t going to be particularly helpful. They might not even be applicable, since her vision might be gone long before 10 years has passed. In addition, if the underlying condition isn’t MS, treating with MS meds can actually be harmful (that’s what happened to me.)

      There are two conditions involving recurrent ON that many doctors don’t even know about. Your wife’s neuro-ophthalmologist should know about them, but it isn’t clear from your post what that doctor tested for or discussed with you.

      The first condition is neuromyelitis optica (NMO) and the other is chronic relapsing (or recurrent) inflammatory optic neuropathy (CRION). In NMO, recurrent ON without spinal cord involvement is part of the NMO spectrum disorders. I read one article that speculated that CRION is probably really NMO. After I got away from the unqualified neurologists in my medical group, I was diagnosed with NMO. There are other conditions that can cause ON, but presumably the rheumatologist ruled them out.

      There is an antibody test for NMO, but it has a false negative rate of at least 30% and possibly as high as 50%. A positive test is virtually diagnostic of NMO, despite the presentation. In the event of a negative NMO antibody test, a diagnosis has to be made on the basis of presentation. That can be beyond the ability of many neurologists. What you didn’t say in your post is whether you wife had the NMO-IgG (antibody) test. I would hope that she did but it came out negative, which is what possibly prompted your wife’s doctors to say they don’t know what the condition is, but they’re going to treat it anyway (presumably treating it as if it’s NMO). If she hasn't had the NMO antibody test, she should have it now.

      The treatment for recurrent ON that isn’t due to MS is immunosuppressants/chemotherapy agents. Steroids are used when indicated. Because steroids do their own long-term damage, the idea (in rheumatology also) is to get patients off of steroids and onto other meds whenever possible. Sometimes that isn’t possible (I’ve been on daily low-dose prednisone for years, and had been on high-dose pulsed IV steroids for years). There isn’t an absolute protocol for treating recurrent ON that isn’t due to MS, but the generally used procedure is high-dose steroids to treat acute flares and get the inflammation under control, then immunosuppressants/chemo as the maintenance treatment. I’ll come back to this in a minute.

      You said that you can’t find a doctor to help you. But your doctors have already recommended treatment without diddling around waiting for a diagnosis. That’s already advanced thinking. There really aren’t any other choices if your wife wants to save her vision. The only choices are which drugs to use and when.

      If your wife’s doctors are really thinking progressively and aggressively, my recommendation is that you consider a series of plasmapheresis before starting on a medication. They might think it’s a bit drastic if the “only” problem your wife is having is with her vision. But your wife has already had significant vision loss in one eye, and there isn’t any other intervention that has a chance of restoring her vision as effectively. It might help, it might not, but you won’t know unless you try. It’s just that her doctors might not agree.

      ALL of my other doctors – including my wonderful neuro-ophthalmologist – felt that plasmapheresis was too drastic a procedure for me, a mobile patient with adequate vision. But when I ran out of good drug options (due to intolerable side effects) a different neurologist recommended plasmapheresis, even asking me why no one ever suggested it before. Now, that’s thinking progressively.

      The two oral drugs of choice to start with are azathioprine (Imuran) and mycophenolate (CellCept). The intravenous chemo agents of choice to start with are rituximab (Rituxan) and cyclophosphamide (Cytoxan). There are other choices if none of these are indicated.

      These are all serious meds with risks and side effects. But with recurrent, serious ON, the choices are meds or progressive vision loss. It is what it is, and you deal with it or you don’t. There’s no way to sugarcoat that. The longer your wife waits to start a med, the greater the chance that she’ll have another episode, possibly worse than the last.

      The only reason I can still see after 24 years is that I’ve been very aggressive, taking numerous meds and acceptin all of the risks. I’ve been on meds so scary that some doctors have declined to take my case, and others have referred me on because they weren’t comfortable handling my case anymore.

      It can be very difficult to find doctors who know how to deal with recurrent ON. You’re fortunate that your wife’s doctors are well-informed and progressive enough to recommend treatment without a firm diagnosis.

      If you want another opinion about treatment, or you want to continue to pursue a diagnosis (which may not result in a change in treatment), you should seek out the best neurologists/neuro-ophthalmologists at as high a level as possible. Since money isn’t an issue, the best advice will come from world-renown medical centers such as Johns Hopkins and the Mayo Clinic (the Minnesota and Arizona clinics both have international experts on NMO). The University of California, San Francisco and the Cleveland Clinic are also highly rated and should be able to provide insight into your wife’s case. Any large university-level center can help, but for the money, you may be better off starting with one of these large centers with the international reputations for excellence.

      I wish your wife and you all the best as you pursue a treatment regimen and a diagnosis.

      Caution: Not proofread before posting.

      Comment


        #4
        Many patients who are ultimately diagnosed with MS present initially with optic neuritis so that is a reasonable concern, though not all cases of ON turn into MS.

        Still vision loss is a major problem and I sure wouldn't want it brushed off for 3 years as "Gee, we don't know what is wrong." I would get another doctor for a second opinion, quite possibly more than one since you would likely want to see a neurologist who specializes in MS as well as a neuro-ophthalmologist. Maybe another rheumatologist, though that might depend on whether your wife has symptoms other than ON, also compatible with joint/connective tissue illnesses.

        Especially since money is no object, consider making an appointment at a place like Mayo Clinic where you can see all the different specialists in one place, and where they all talk to each other and share ideas on your case When dealing with something as important as eyesight, traveling to another city or state is not that big a deal, especially if once a diagnosis is made you could be seen in your own hometown for follow-up.

        Comment


          #5
          Thank you all SO much for your replies.

          Redwings - I just read your post with my wife and you seem to be a wealth of information. Thank you again for taking the time. She has had a battery of tests, though we are not sure she has been tested for NMO. We are checking into that. The doctors seem to be thinking along the same lines as you, but they all seem to be in disagreement as well. The neurologist recommended Cytoxan but the rheumatologist did not want to go there without a diagnosis. The prednisone, at least at the low dose she has been taking, is not keeping this thing under control anymore and her vision is quite impaired in her right eye.

          We have contacted the Mayo Clinic and sent them all her records, but they have a major backlog and can't schedule her until at least September. We have set an appointment at the end of July at the Bascom Eye Institute in Miami, which seems to be very highly rated. I am just wondering if there is anything we should do in the meantime...

          One other question - is it likely that once the vision is hindered as it is now, it's gone forever or is there a chance of restoring vision in her right eye with proper treatment?

          Comment


            #6
            Hi ryanatx:

            I have a few more thoughts.

            First, YES, the Bascom Palmer Eye Institute is top notch, so they’re an excellent choice. A follow-up at Mayo will be most excellent.

            Depending on when your wife saw the neuro-ophthalmologist, it’s possible that an NMO antibody test might not have been done at that time. The Mayo Clinic, who developed the test and is a global leader in NMO research, has said that the antibody test is not intended to be used as a screening test for every person who has one or two episodes of ON. It should be used when a diagnosis is unclear. And that sounds like exactly the situation your wife is in now. So if the neuro-ophth didn’t order the test, by now the neuro should have. If not, it’s a good idea to ask for it ASAP. The docs at Bascom will ask about it. When I was seen at the MS center at USC, it's the first thing the neuro asked for.

            I think it’s also good that your wife’s rheumatologist doesn’t want to start Cytoxan without a diagnosis. Cytoxan is heavy-duty stuff, and none of my doctors would use it as a first choice after steroids. Your wife’s neuro might have been thinking that loss of vision requires the biggest gun first, but more common is to start with Imuran or CellCept, tapering off the steroids as indicated. The docs at Bascom will, of course, base their recommendation on your wife's presentation.

            It seems to me that if her neuro thinks Cytoxan is appropriate, then I don’t see why s/he would object to plasmapheresis first. My newest neuro brought up Cytoxan for me after my plasmapheresis series is finished, but that’s only because I've virtually run out of other drugs to take. And I still will investigate all other remaining avenues first. Knowing how my docs think/have thought, they would recommend Imuran or CellCept – maybe even Rituxan -- before Cytoxan, and one or two might suggest plasmapheresis first.

            Before you get to Bascom, I'd say your wife should probably continue on the prednisone and, if it hasn't already been done, get the NMO antibody test.

            Before you leave Bascom, the most important questions for you to ask are the usual: 1) what do you think this, 2) what should the next steps be, and 3) what treatment do you recommend? Between Bascom and Mayo, your wife should be well taken care of.

            It's impossible to predict what kind of visual recovery your wife will have. The general guideline is that, the longer vision is gone without recovery, the less likely it is to recover. If you're looking for a number, the general consensus is that any vision that hasn't returned after six months isn't likely to return. That doesn't mean that it absolutely won't recover, but it shouldn't be expected to recover, and anything that does come back is a blessing. I've actually had both things happen in the same eye. A big chunk of visual field never came back, but of the part that did, I had continuing recovery up to a full year later. So you never know.

            Comment


              #7
              Thank you again, Redwings. This information is invaluable to us. We are scheduled for Bascom on July 31, Mayo in September, and we are also going to a well-known vasculitis clinic in Cleveland on the referral of her rheumatologist. In the meantime, she has restarted the prednisone, though it doesn't seem to be restoring her vision just yet. Hopefully, she will see some improvements over the next few days.

              Thanks again. I will let you know what we find out.

              Comment


                #8
                I am so sorry your wife is dealing with optic neuritis

                It sounds as if you are trying many different ways to help. That is the best, keep trying. My prayers are with your family. I am so sorry you are dealing with this. Just when I thought my things were on the uphill several years ago, bam, I was hit with optic neuritis. My family physician suggested I go gluten free and dairy free. So I asked how long this should take. Several months was the answer I received. Even though the answer was correct for me, it was not the answer I wanted.

                I have been gluten free and dairy free since then. I did receive my sight back. So for me, it was easy to go gluten and dairy free if it gave me back my sight. For some reason, the gluten and dairy caused inflamation for me. I know this is not the answer for everyone, but I just wanted to post my story, because only more information is helpful. I am so sorry your family is dealing with this.

                Comment


                  #9
                  I am on Rebif and have recurring optic neuritis as my only MS symptom in 15 years. (15 years ago, I had spinal cord lesions that have since cleared up) It frightens me when you say that Rebif could be bad if what I have is NMO. Please explain the facts behind that statement. I tested negative for the NMO antibody in lumbar puncture, but my optic neuritis has been so severe and persistent that I wonder if it was a false negative. I don't want to cause damage by being on Rebif.

                  Comment


                    #10
                    Originally posted by Lilacs7 View Post
                    I tested negative for the NMO antibody in lumbar puncture,
                    Lilacs7,

                    The test for NMO is a blood test which is sent to the Mayo Clinic. It has nothing to do with the Lumbar Puncture. You may want to discuss this with your neuro.
                    Diagnosed 1984
                    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                    Comment


                      #11
                      Actually SNOOPY the NMO test can be done on spinal fluid. Its just easier to do the test on blood. My doctor jokingly asked if I'd rather have another LP and have my NMO test done on my spinal fluid instead and of course I said no thank you.

                      Lilacs yes your NMO test could have been a false negative because a 30% chance of a false negative is pretty high!

                      And its funny in a not so funny way how much what's going on with you sounds like what happened to that other poster. No wonder your worried!

                      There's a foundation for NMO with a very good website and a forum called Spectrum. Have you been there? I think its a good idea. I got a lot of good information there when I was studying up on NMO. http://www.guthyjacksonfoundation.org/. I'm sure somebody there can tell you a good place to go for another opinion. Good luck I hope you get your questions answered.

                      Comment


                        #12
                        I can Relate

                        Ryanatx,
                        I'm going thru the same situation.
                        I have recurring ON, it's been going on for about 5 years.
                        I was first DX with MS when I was 19 in 08', with a clear MRI, but I got a second opinion with a new neurologist and he seems to think it's something else.

                        I just finished the 5 day IV steroid treatment last week from a recent episode, like your wife I'm scared this will keep coming back and I'll lose my vision.

                        Until then, it's just testing and "wait to see" for me, but I'm curious to see if they find anything for your wife, either DX or to repair her vision. Please keep us posted and good luck
                        Amanda
                        DX RRMS 2008 - 2013
                        Copaxone 2008 - 2010
                        Limbo - 2013
                        3 Relapses of Optic Neuritis 2008-2013

                        Comment


                          #13
                          My neurologist is one of the best MS specialists in the country, and I highly doubt he would have put me through the lumbar puncture if it wasn't testing for NMO. They told me that the spinal fluid is more accurate than blood, but I will probably suggest retesting my blood again just because NMO sounds so scary and, if nothing else, another negative will give me comfort in the time being. And I'm DEFINITELY not going through the lumbar puncture again. That was torture (spinal headache was debilitating. Had to get a blood patch for relief.)
                          Next up is plasmapheresis, though, because I've gone through too many steroid infusions this year. Wish me luck!
                          Has anyone else had many, many bouts of ON as their only symptom?

                          Comment


                            #14
                            Originally posted by MSer102 View Post
                            Actually SNOOPY the NMO test can be done on spinal fluid. Its just easier to do the test on blood.
                            Thanks for the correction, MSer102 I had only been aware of the blood test.
                            Diagnosed 1984
                            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                            Comment


                              #15
                              Re: NMO IgG testing.

                              Re: NMO IgG (AKA Anti-Aquaporin-4 Antibody) testing. Actually testing via the spinal fluid is less informative (as per the Mayo) and testing the serum is the preferred and most accurate method. There are patients who will test positive in both the serum and spinal fluid but this most often occurs during an acute relapse and yes there is scholarly literature to that effect.

                              http://www.biomedcentral.com/content...-2094-7-52.pdf

                              Mayo Lab Link re: CSF testing.

                              http://www.mayomedicallaboratories.c...Overview/83936


                              Grace (NMO+ since 2005)

                              Comment

                              Working...
                              X