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Just got a call from my neuro with diagnosis:(

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    Just got a call from my neuro with diagnosis:(

    Hi everyone. So here's the update: Well, my MS specialist Neuro called me in response to my worsening symptoms and pain. He told me that I do not have MS but that I do have NMO (Devics). My test for the NMO igG was positive and my brain lesions arent MS lesions, theyre from NMO. So the ms symptoms I've been having are really transverse myelitis. Wow! I'm not sure what to think now. MS was bad enough!

    So now they're getting me in to go over treatment, and pain management...

    Anyone have experience with NMO treatment?


    Hi IslandGirl3,

    Are they saying you definitely don't have MS? What defines the NMO vs MS?

    When I first had sx, I saw 2 neuro's. One was a very prominent MS Specialist at the University of Pennsyvania. He told me I had Transverse Myelitis. I went to a new neuro, got more MRI's 6 mos later and now have brain lesions which I didn't have before and he also told me that Transverse Myelitis CAN be the "first attack" of MS.

    Just curious
    Sx's 5/1996 Dx'd 9/2011
    RRMS- Betaseron, Copaxone, Tecfidera, Aubagio
    Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all


      Hi IslandGirl3:
      Go immediately to the website of the Guthy-Jackson Charitable Foundation:

      This is the premier website about NMO. You can find out technical information about the disease and its treatment, learn about what your NMO antibody test result means, and join the online community through the "Spectrum" link. The folks there will be very supportive and can guide you to getting a second opinion if that's what you would like. A confirmatory opinion might not be a bad idea, considering the medications you'll be on.

      Treatment for NMO is different than for MS. First, steroids are a lifeline to getting the inflammation down. In MS, steroids can be more of an option for shortening the duration of a flare, but in NMO they can be a critical necessity. Second, the maintenance drugs are immunosuppressants (e.g., CellCept, Imuran, cyclosporine) or chemotherapy agents (e.g., Rituxan). The interferons used for MS are contraindicated in NMO; at least 4 studies have shown that they aggravate NMO and make the condition worse (they did for me). Copaxone hasn't been shown to be harmful, but neither has it shown to be of any help.

      Getting into the NMO community through the Guthy-Jackson Foundation website will be helpful in learning about the treatment meds and how to live with them. I'm in the group of NMO Spectrum Disorders and have been on immunosuppressants for years and on huge amounts of steroids that shock medical professionals who aren't knowledgeable about NMO. I've had trouble with all of the drugs. (I didn't have any problems with Rituxan, but it provided me no benefit, either.) In addition to living with the effects of the disease, my life is full of living with medication side effects. Of course, your mileage may vary, but there are a lot of things you'll have to stay on top of.

      So go to the website right now. Do not pass GO. Do not collect $200. (Does anybody still play Monopoly?) RIGHT NOW!


        Hi Alliesmommy,
        I was diagnosed with MS my an MS specialist at a major university in 2002. However, the legions were all in my spine. MS and NMO (Devics) share similar symptoms however they are not the same. It is now known that some MS patients really don't have MS, but have NMO although NMO is rare. Myelitis can be in both MS and Devics, but they use MRI's (NMO usually have normal brain and abnormal spine MRI's) AND a very specific blood test. My new MRI lesions are consistent with NMO, but the true defining test is the NMO igG discovered & developed by the Mayo clinic. MS people don't have a positive test, it's only positive in NMO. It's a very definitive test and specific to diagnosing NMO along with the other NMO criteria such as transverse myelitis and optic neuritis.


          REDWINGS, thank you, thank you, thank you! I am sorry to hear that you too have NMO, but I'm very scared and now I'm not alone! I will check out the website ASAP! My husband is wondering if we should fly to Mayo Clinic for a consult...well, I have a start, thank you Redwings!

          I know I'll have more questions coming, I hope you don't mind if I pick your brain from time to time?

          Blessings to you!



            Thanks for differentiating the two. I never knew that. I also had lesions in my spine and neck but none in my brain until 3 mos ago. I'm guess the blood test for me was neg otherwise he probably would have said I had NMO as well.

            Always learn something new here everyday!

            Thank you and best of luck to you!
            Sx's 5/1996 Dx'd 9/2011
            RRMS- Betaseron, Copaxone, Tecfidera, Aubagio
            Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all


              alliesmommy: The NMO antibody test has about a 30% false-negative rate. A negative test is not an indication or guarantee that a person doesn't have NMO, just as a negative lumbar puncture is not an indication or guarantee that a person doesn't have MS. In the situation of a negative NMO antibody test, the differential diagnosis has to be made based on all of the other signs of what the disease looks and acts like. A neurologist who hasn't seen many cases of NMO and doesn't have much experience with the spectrum of presentations is probably not qualified to make that call. (I can't even tell you the amount of crap I took from several doctors about my diagnosis.)

              If there is any question at all about whether a person has MS or NMO, a qualified specialist should be called in to make the determination. Dr. Pittock of the Mayo Clinic has said that he believes thousands of people with NMO have been misdiagnosed with MS (I was). If you think you might have NMO even though your antibody test was negative, go to the Guthy-Jackson Foundation website ( and get a recommendation for a doctor to see for another opinion.

              IslandGirl3: Of course you can pick my brain. But after you meet the brains at the Guthy-Jackson Spectrum community, I don't think you'll have much use for mine!


                I know it's a bit off-topic, but isn't this another reason to start with Copaxone since it is likely less harm, should a person be misdiagnosed with MS who actually as MNO?


                  Glad he called and you didn't have to wait for a couple of more weeks to get an answer. I was wrong in that i did not think he could diagnose it so soon. Glad your out of the uncertainty and on your way to being correctly treated. It will make a world of difference to your health. Good Luck. You have gotten such a greater certainty in just one night. You move fast, once you get going!


                    REDWINGS: thank you! I wanted to explain the false negative possibility to ALLIESMOMMY, but was on the phone this afternoon with the Drs. THANK YOU too for sharing the Guthy-Jackson NMO website!!!! It's VERY helpful and I'll be joining for sure to get encouragement and help

                    ALLIESMOMMY: I'm so sorry that you too are experiencing transverse myelitis. I pray you get the help you need and that you will be diagnosed correctly! Ask your neuro about testing you for NMO again in a few months.

                    God Bless you!


                      LYNN: thank you! Yes, as weird as it sounds I'm so relieved because now I can get the right treatment! As REDWINGS has said, it's critical to get treatment for NMO and not for MS so for that I'm grateful!

                      Thanks again! Blessings to you!


                        Originally posted by BigA View Post
                        I know it's a bit off-topic, but isn't this another reason to start with Copaxone since it is likely less harm, should a person be misdiagnosed with MS who actually as MNO?

                        For Transverse Myelitis as a presenting symptom i would think it would be crucial to start with copaxone.

                        it explains why many with TM do start with copaxone!


                          Hi Islandgirl3,

                          You sound very much like myself, I am currently waiting for my blood test to come back from the Mayo Clinic.

                          I was diagnosed with MS in 2005 did all of the dmd's but the "relapses came fast and furiously" in spite of the drugs. In 2005 I had ON followed by entire body numbness a few months later. Most of my lesions are located on my cervical spine and are quite large, although I do have a few brain lesions. This led to my ms dx.

                          Since then my doctor left the area and my knew neuro wanted me tested for NMO because my spinal lesions were indicative of NMO as opposed to MS. When I went to the website that Redwings directed you to I found that my new doctor is listed as one who treats NMO and MS. This is making me a little more nervous because not only is he up on things he probably knows the difference.

                          So I wait for the blood test to come back and worry over what might come.

                          Good luck to you and keep us informed, I have a sneeking suspicion I will be looking at the same things.


                            Hi FREEDOM1,
                            Wow! Yes, we have a similar situation for sure! Well, I'm so sorry that you too are going through this. I will keep you in my prayers as you wait for your blood test to come back. I was quite anxious waiting for mine. And I must say, I was very shocked when it came back positive.

                            I've been on the phone all day calling Mayo clinic and several other universities besides the one I go to in an attempt to see an NMO specialist. It's exhausting! The insurance aspect is also a pain cause they won't let me go to Mayo until I've jumped through their hoops first...

                            Well, I know you're nervous, I was a wreck waiting, but hang in there! Whichever way your test comes back, you need to look at it as a positive because THEN your dr willnknow how to treat you since MS and NMO are totally different treatments.

                            Do what REDWINGS told me and go to the Guthy Jackson NMO website. It's great! Also go to Utube and search NMO Mayo Clinic and you'll get great NMO videos from Dr Pittock of Mayo Clinic.

                            Hang in there and please let us know your results! Praying for ya!


                              Hello IslandGirl3,

                              I'm sorry to hear of your recent diagnosis of NMO. I have had NMO since 2005.

                              The Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research, has formed a Research Consortium. Members of the Consortium (Mayo, UTSW, Hopkins) announced at the 2010 NMO Conference, that they are willing to confer with the physician of any NMO patient free of charge. If you would like contact information, I can easily supply it to you. My own support and advocacy site, Devic's Support, recently integrated with the Guthy-Jackson Foundation and can be found within their Spectrum Patient Community. If you would like contact information, you can find me via Devic's Support, at Spectrum.

                              I hope that you'll consider joining us, and that we can be of help.

                              Grace NMO+ since 2005