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    NMO or MS??

    Very confused and waiting still. I am new to this world of message boards so please bear with me I was inpatient for 5 days in February and was told I either have MS or NMO (Neuromyelitis Optica) and the treatments are very different. Since then I have been on steroid treatments until confirmation of the diagnosis.

    I have heard conflicting discussions about MS vs NMO. Some people have said it is a form of MS while others have said it is a completely separate disease. While they present in the same manner...I had complete left side numbness and right hand paralysis which prompted hospitalization...my MRI showed 2 lesions on the right side of the brain and 1 elongated lesion on the upper spinal cord.

    What I have read about NMO terrifies me and reduces me to tears. I am scared about this whole new journey to be frank, regardless of whether I have NMO or MS. Any thoughts, input, insight, about MS/NMO would be most appreciated!

    Also...stupid question I am sure, but what is, if there is, the difference between "white matter" and "black holes"....I see those terms being used a lot in MS discussions....

    Thank you!

    #2
    NMO is very scary ... that is what I am in limbo with .. however Dr. Nice who I saw in the ER - who is doing her fellowship in MS said that with NMO your lesion on your spine is very very long .... tike from T1-T10 ....

    I have 3 lesions on my brain all on T2 whatever that means ...

    I am every new to all of this ....

    there are very few people who actually have NMO ....

    has your antigen come back yet?
    Jan 2012 - Onset of ON
    Feb 2013 - 2nd DX of ON
    March 2013 - 5 days IV steroids
    April 2013 - 5 days IV steroids
    June 5, 2013 - DX of RMMS

    Comment


      #3
      I'm so sorry to hear about what you've been going thru. Waiting for a diagnosis can be torture!

      I studied up on NMO when my doctor thought I had it. NMO and MS are completely different diseases even tho they do a lot of the same things. What I found out is that if you as about NMO in MS forums you'll probably get a lot of bad information from people who mean well but really don't know anything about NMO and they'll tell you things that are complete wrong. It happened in this forum just a couple of weeks ago. So for good information about NMO I think you should ask in NMO forums and never in MS forums.

      To answer your questions - white matter is part of nerve tissue in the brain and spinal cord. Its the part of nerves that are covered in myelin - that's what makes it white. Gray matter is the part of the brain and spinal cord that doesn't have much myelin so it looks gray. Since MS is a demyelinating disease it shows up mostly where the myelin is so lesions are mostly in white matter.

      Black holes are areas of old permanent damage in the brain that show up a particular way on an MRI. They aren't really black and they're not really holes. They're just called that because of the way they look in the picture.

      The National MS Society has a lot of good information on their website so its a good place to go to get questions about MS answered. And you can ask here too (but better to ask about NMO in an NMO forum).

      Comment


        #4
        Hi Labladynh and welcome to MSWorld

        NMO aka Devics disease was once considered a variant of MS, that is no longer true. NMO is a different disease and as you already know, NMO is treated differently than MS.

        For the best information about NMO please visit The Guthry Jackson Foundation. There is a wealth of information about NMO and they have a forum so you can talk to those with NMO.
        http://www.guthyjacksonfoundation.org/

        Please feel free to ask any questions about MS or NMO here at MSWorld. We do have members who have NMO but they are not always around.
        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


          #5
          Originally posted by imrachelk View Post
          however Dr. Nice who I saw in the ER - who is doing her fellowship in MS said that with NMO your lesion on your spine is very very long .... tike from T1-T10
          That's really funny but also really scary coming out of a doctor. The spinal cord lesions are long in NMO but they don't have to be THAT long! The diagnostic criteria for NMO require only a 3 segment lesion, not 10! And in the NMO spectrum they don't even have to be quite that long. Good grief!

          That's how I learned that the only places to get good NMO information are legitimate medical sites and NMO forums. Not even from doctors who ought to know better. Thanks to that doctor this is another example of how misinformation about NMO gets into MS forums.

          So best thing is to go to the site the other poster mentioned. http://www.guthyjacksonfoundation.org/ I went there a lot when I was studying about NMO and that's where I realized what a bad idea it is to ask about NMO in MS forums. Just about everything I read about NMO in MS forums then and now is wrong. Please don't let that happen to you. NMO is waaay to scary for anybody to be believing bad information!

          Comment


            #6
            Originally posted by MSer102 View Post
            That's really funny but also really scary coming out of a doctor. The spinal cord lesions are long in NMO but they don't have to be THAT long! The diagnostic criteria for NMO require only a 3 segment lesion, not 10! And in the NMO spectrum they don't even have to be quite that long. Good grief!

            That's how I learned that the only places to get good NMO information are legitimate medical sites and NMO forums. Not even from doctors who ought to know better. Thanks to that doctor this is another example of how misinformation about NMO gets into MS forums.

            So best thing is to go to the site the other poster mentioned. http://www.guthyjacksonfoundation.org/ I went there a lot when I was studying about NMO and that's where I realized what a bad idea it is to ask about NMO in MS forums. Just about everything I read about NMO in MS forums then and now is wrong. Please don't let that happen to you. NMO is waaay to scary for anybody to be believing bad information!
            Sorry for the misinformation .... I will admit I am 100% confused about BOTH MS and NMO....
            Jan 2012 - Onset of ON
            Feb 2013 - 2nd DX of ON
            March 2013 - 5 days IV steroids
            April 2013 - 5 days IV steroids
            June 5, 2013 - DX of RMMS

            Comment


              #7
              Some basic diagnosing information about NMO:
              http://www.mayoclinic.org/medicalpro...is-optica.html
              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


                #8
                Hello Labladynh,

                My name is Grace and I have had NMO (Neuromyelitis Optica) since 2005. The previous posters were correct, that the best place to get accurate information about NMO is at an NMO site as opposed to an MS Forum. Although the research community previously thought that NMO was a severe MS Variant, they have now known for some years that it is it's own disease with a pathology that is very distinctive from that of MS. Unlike MS, it is antibody and BCell mediated. It is the first autoimmune disease to have it's own biological marker (NMO IgG AKA Anti-Aquaporin-4 Antibody). It also requires a totally different treatment protocol. The MS CRAB drugs and Tysabri are not recommended for the treatment of NMO and in fact the interferons (particularly Rebif) can make it much worse. MS requires immunomodulation but NMO requires immunosuppression or a targeted therapy such as Rituxan, that accomplishes BCell depletion (Rituxan is anti CD20+)

                Poster Snoopy made a very good suggestion, that being to visit the Guthy-Jackson Charitable foundation for NMO Spectrum Disorders Research. They have the most up to date and comprehensive library of NMO scholarly literature in one place on the web.

                Keep in mind that while a positive antibody test is definitive for the disease, a negative result cannot rule it out as there is roughly a 30% chance of a false or masked negative.

                Respectfully,
                Grace (NMO+ since 2005)

                Comment


                  #9
                  Hi MSer102.

                  LETM (Longitudinal Extensive Transverse Myelitis) within the context of NMO refers to a lesion that encompasses at least three full segments of spinal cord, but often many more. It's not unusual at all for NMO patients to have lesions that are much longer than that. We have members in our NMO Community that have had lesions from the Cervical Cord to Conus Medullaris. Also, many patients who have NMO Spectrum Disorder (which is seropositive relapsing LETM *or* seropositive relapsing ON *but not both*) as opposed to full blown NMO, and are experiencing relapsing LETM, often have lesions in excess of three segments.

                  Respectfully,
                  Grace (NMO+ since 2005)

                  Comment


                    #10
                    I have moved your thread here because this is where people specifically go to discuss NMO, and I feel you would get better answers here than anywhere else. Good luck.
                    hunterd/HuntOP/Dave
                    volunteer
                    MS World
                    hunterd@msworld.org
                    PPMS DX 2001

                    "ADAPT AND OVERCOME" - MY COUSIN

                    Comment


                      #11
                      Thank you Grace for adding to the conversation. I guess my point is that even tho NMO "often" has very long spinal cord lesions that doesn't mean that all or even most people with NMO "usually" have very long ones.

                      I think that if a doctor was going to say only one thing to someone about how to describe the lesions in NMO saying that they are about 10 segments long was probably not the best picture to paint especially when it goes way beyond what the diagnostic criteria say for what it takes for someone to be diagnosed.

                      It makes me wonder if one of the reasons NMO gets misdiagnosed so often is because that's what even doctors are thinking NMO has to look like before they recognize it as NMO. And it doesn't help that a doctor was the source of misinformation - or at least a really slanted description of the disease - that got passed on.

                      Comment


                        #12
                        Hi again MSer102,

                        I think that the biggest issue, is that the vast majority of neurologists will never see a case of NMO during their term of practice much less treat a case. Prevalence (existing cases) is estimated to be roughly 1-2 per one hundred thousand, and Incidence (new cases) is estimated to be 1 per one million of the population. A large number of us end up being treated at one of the larger teaching and researching facilities (myself included). There are also many patients who travel some distance to be evaluated by an expert clinician who then oversees their care via their local neurologist.

                        The Guthy-Jackson Charitable Foundation For NMO Spectrum Disorders Research has a Clinical Consortium (Mayo, Hopkins, UTSW), and the clinicians who are part of the Consortium are willing to confer with the neurologist of any NMO patient free of charge. Many members of our immediate NMO Community have taken advantage of this with very good results.

                        NMO is a serious disease with serious implications for the patient which is why it's so important to have a neurologist who is not only NMO literate, but is familiar with all of the scholarly literature, research, and clinical trials, past and present.

                        Grace (NMO+ since 2005)

                        Comment


                          #13
                          NMO testing vs MS or Neither

                          Originally posted by Grace53a View Post
                          (NMO IgG AKA Anti-Aquaporin-4 Antibody). Grace (NMO+ since 2005)
                          My Neuro just had me go for this blood test. But I am pretty sure my spinal MRI is clean, and so was my brain. Just currently a long lasting case of Optic Neuritis. A month so far, but apparently as per my Neuro it could last up to 10 months! Bleh!

                          Photography is my Passion. I can hardly edit my work now because my eye sight is so weird looking.

                          Comment


                            #14
                            Another thing that I want to add, is that although the research community previously thought that NMO patients did not develop brain lesions, they have known for some time now that a percentage of patients will indeed develop them though they are not in a pattern that is consistent with MS, and the *initial* brain MRI is usually clean. Brain lesions can not exclude a diagnosis of NMO. Common areas for brain lesions in NMO patients are the brain stem (including the pons), hypothalamus, thalamus, and any areas of the brain proper that have a high expression of Aquaporin 4 (the major water-selective channel in the Central Nervous System of mammals).

                            Grace

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