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    MS or Devic's

    I had an appt today with my new neuro and he ordered the blood test for Devic's. I was diagnosed with MS 6 years ago, however I have had symptoms for many years prior to the actual diagnosis.

    I understand the difference between the two illnesses but I am confused. Devic's seems to come out of the blue, at least that is what I am getting from the internet. I have had many years of symptoms and flairs.

    However, ON followed by entire body numbness is what finally led to my diagnosis. I have very large lesions on my spinal cord and very few small lesions on my brain.

    I am looking for any information you can share with me. It will take about 3 weeks for my bloodwork to come back from the Mayo Clinic. This is driving me crazy and the information I am finding out there is somewhat terrifying. I was more at peace with the MS diagnosis.

    #2
    Hi freedom1:
    Yes, the classic presentation of neuromyelitis optica/NMO/Devic's does seem to come out of the blue. However, the more that has been discovered about NMO, the more it has become apparent that there's a spectrum of presentations that includes the not-surprisingly-called NMO Spectrum Disorders. My first episode of ON was so subtle that my doctors and I didn't even realize what it was. The second and third episodes were more significant and unmistakeable, but resolved with steroids. It wasn't until my fourth episode that I had the killer, wipe-out large permanent vision loss in one eye. AND it took 12 years before the spinal cord trouble started. Definitely not classic.

    None of my previous doctors had kept up with the NMO research and to this day don't believe I have NMO because my presentation wasn't classic. In 1995, my neuro (an MS "specialist") had never heard of the the new NMO-IgG test and refused to order it for me. ("I'm not going to order some esoteric test.") When I got to the MS center at USC, the NMO test was the first thing the neuro asked about, and it hadn't been done. So HOORAY that your neuro is well-educated enough to have ordered the test for you!

    Your presentation is not absolutely classic for NMO but very suspicious. The confounding factor in diagnosis is that the NMO-IgG antibody test has at least a 30% false negative rate (that percentage may have been revised since I last checked). Worse, there are some people with classic, devastating presentations of NMO who have NEVER tested positive for the antibody, no matter what test method was used.

    Yes, NMO's potential is really scary. However, the "spectrum" aspect has allowed for a wider range of prognoses. My first identifiable episode of ON was in 1988, and, although my optic nerves are severely atrophied, I'm not blind -- it's a miracle I still see as well as I do -- and I'm still walking around quite well under my own power.

    The website of the Guthy-Jackson Charitable Foundation (www.guthyjacksonfoundation.org) is the premier site for NMO/Devic's information. The "Spectrum" section is their online community. So without further ado, go there NOW!

    Comment


      #3
      Thank You Redwings for your informative explanation. I am nervous awaiting my test results, probably not as nervous as my husband, he told me he can't manage without me Hahaha.

      I do feel that my new doctor who is an MS specialist knows his stuff and that is reassuring. I spent my whole adult life going from doctor to doctor looking for a diagnosis and when he told me he wasn't convinced of MS and started talking NMO it blew me away. I finally got a diagnosis of MS and was comfortable (as comfortable as one could be) with it and to have it change was not in the cards for me.

      Anyway, I am nervously awaiting the results and I have already seen the website that you mentioned and I have to say it has put my mind at ease.

      Thanks again for your input I always look forward to your replies, they are very informative!

      Comment


        #4
        So I got the results from my blood tests today...

        NMO antibody 1.265 negative
        ANA 320 positive
        SSA/SSB 0 negative

        My doctor wants to repeat them in 6 months and told me if I have any problems out of my ordinary day to day symptoms to call and come in immediately. Sounds to me as if he is not trusting the test results.

        Shouldn't the NMO be 0, either you have the antibody or you don't? I know that this test gives a 30% false negative rate and that I read somewhere that positive ANA's are more likely to be found with NMO than MS.

        Anyone have any ideas? Waiting for 3 weeks for the test results drove me crazy now I have to wait 6 months for another!

        Comment


          #5
          You may want to read IslandGirls3 post. She was some who thought she was RRMS for many years and then unexpectedly found out it was Devics based upon the Devic's blood test. She got the results of the blood test before she she saw the doc to explain what the results meant. She has ranges in some of her threads..along with support from the others with devics. and one person also going through the testing, maybe 2?

          http://www.msworld.org/forum/search....archid=1316729
          xxxxxxxxxxx

          Comment


            #6
            Where did you find it???

            Originally posted by Redwings View Post
            Hi freedom1:
            Your presentation is not absolutely classic for NMO but very suspicious. The confounding factor in diagnosis is that the NMO-IgG antibody test has at least a 30% false negative rate (that percentage may have been revised since I last checked). Worse, there are some people with classic, devastating presentations of NMO who have NEVER tested positive for the antibody, no matter what test method was used.

            The website of the Guthy-Jackson Charitable Foundation (www.guthyjacksonfoundation.org) is the premier site for NMO/Devic's information. The "Spectrum" section is their online community. So without further ado, go there NOW!
            My Neuro has tested me 2 times now for NMO and the test has come back negative, but I show all the classic signs of NMO. Constant issues with NMO Large leasons on my spine and difficulty with legs and arms. Can you tell me where you found the false negative info?
            Time is but a name we give to the passing moments of life, it is these moments that hold all the meaning.

            Comment


              #7
              Hello freedom1,

              I have had NMO since 2005 and have a positive NMO IgG titre. Actually, it is not unusual to test a second time in the event of a negative result. As Redwings mentioned, there are patients with the classical form of NMO who will continue to test negative throughout the course of their disease.

              I have had roughly six NMO IgG+ tests done since my onset in 2005, my most recent being in June of this year. All of them have been positive, with the exception of one that was done while I was hospitalised and had just completed a five days of IV SoluMedrol and two weeks (one treatment every other day) of Plasmapheresis. (PLEX or Plasma Exchange). It was obviously a masked negative.

              Try not to stress. I'm glad that you found the Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research. They are the most comprehensive NMO information and resource site on the web, and have donated many millions of dollars towards the NMO research effort. You can also interact with other patients through the Spectrum Patients Community. My own support site was recently integrated with Spectrum and there are many there who have been through the stress of the diagnostic process, who would be willing to give you input. More than a few, were previously misdiagnosed with MS.

              Grace (NMO+ since 2005)

              Comment


                #8
                Hi Grace53a,

                Thanks for the input, I will check out the support groups at Guthy Jackson. Maybe it will help me get a better understanding.

                Rocky 282,

                I believe I found the information on the Mayo Clinics website, although I have read it many other places, hard to remember where I have viewed so many. It was also on the test results from the Mayo Clinic when I received my results online from my hospital. Also Redwings mentioned it so maybe she knows where to go.

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