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Mayo Clinic- MS v. NMO

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    Mayo Clinic- MS v. NMO

    Hi there,

    I'm starting to think my symptoms seem more like NMO than MS, except for the fact that one of my worst symptoms is cog fog, which doesn't seem like one of the major symptoms of NMO...
    I have an appt for the end of the month at Mayo Clinic, and I'm hoping it will be more of a one-stop-shop kind of deal (however, I'm still realistic and aware that not all my problems will be solved, or all my questions answered)

    I have been in limbo for the past two years. I have only recently started to get meaningful results. I have marcus-gunn syndrome in my left eye, but my brain mri is "normal". The doctors I have seen have been fairly dismissive, with the exception of the neurologist who noticed the marcus gunn, and consequently ordered the mdi. But even she failed to order an mri of the spine, and she made it clear that her job, as far as my case is concerned, was done. She told me to go see a bunch of other specialists, but I'm getting so emotionally exhausted from all this doctor hopping. I really hope Mayo will point me in the right direction...

    Any thoughts or advice on this? Thanks!

    You're headed to the right place to sort it out, that is for sure. My initial thought is that classic NMO tends to have very lengthy spinal cord lesions, and if you had had one, you would know about it. That being said, I'm not a doctor nor do I play one on TV, and I completely understand wanting to ask and research and learn about what you may or may not have while you wait.

    I'm in the process of NMO vs MS myself, and it's complex. Medicine's understanding of NMO and NMOSDs (NMO Spectrum Disorders) is rapidly changing and developing, so it's hard to find quality information online. And definitely don't trust what you read on message boards, including what I have to say. I know that sounds bizarre, but there is so much misinformation out there.

    There is a blood test that can be done with NMO, and as I understand it positive is positive, but there is a 30% false negative rate, so at that point it becomes preponderance of evidence.

    Check out the Guthy-Jackson site, it's as a nonprofit dedicated solely to NMO and NMOSD and there is a lot of data, as well as a forum if you need it. There is so much misinformation about NMO out there, and I've found it to be an invaluable resource.


      Hello ASinger and Alicious,

      I'm an NMO patient of nine years diagnosed via the Mayo Clinic's original NMO IgG Indirect Immunofluorescence Test. NMO research has literally exploded since the formation of the Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research. One significant change in the Revised Diagnostic Criteria of 2006 (Mayo) is that where previously the research community thought that NMO patients did not develop brain lesions, they have known for some years and now recognize that such is not the case, and that there is a percentage of patients who will indeed develop them. Two recent studies put the percentage of patients who will eventually develop brain lesions during the disease course at 62% and 60%. That being said, the initial brain MRI is usually (but not always) clean and the lesions do not have the appearance of, nor are they in a pattern that is consistent with MS. Common areas are the pons, thalamus, hypothalamus, and any areas of the brain proper that have a high expression of Aquaporin-4.

      For the most accurate and current NMO information, please visit the Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research. They have one of the most comprehensive collections of NMO scholarly literature on the web. To access the NMO Library, go to the Homepage and click on About NMO, then click on Science Publications. When the page comes up, click on Abstracts, and then View all Abstracts. You can then scroll backwards through all of the available articles by using the Previous option. You can also use one of the available keywords, or can enter your own keyword into the Search Bar.

      Below, I've included the 2006 Revised Diagnostic Criteria. Very recently, an international panel funded by the Guthy-Jackson Foundation revisited the criteria. A paper was presented at the American Acadamey of Neurology's 2014 meeting, but as of yet it has not been published in it's entirety. Below you will find the Revised Diagnostic Criteria of 2006 for full blown NMO. There are also limited or abortive forms that includes seropositive (occasionally seronegative) relapsing episodes of ON *or* seropositive (occasionally seronegative) relapsing episodes of TM/LETM but not both, meaning that there are patients who will only ever experience relapsing episodes of ON but will never experience TM/LETM and vice versa.

      Wishing both of you the best,
      Grace (NMO+ since 2005)

      Absolute Criteria:

      Optic neuritis

      Myelitis (TM/LETM)

      Supportive Criteria (must have two out of three):

      MRI evidence of a contiguous spinal cord lesion 3 or more segments in length,

      Onset brain MRI nondiagnostic for multiple sclerosis,

      NMO-IgG seropositivity.

      CNS involvement beyond the optic nerves and spinal cord is compatible with NMO


        NMO Blood Tests.

        To add to my above post---There are currently five or six different testing methods for the NMO IgG (AKA Anti-Aquaporin-4 Antibody) that can be utilized. Currently, it is believed that the best method is the CBA (Cell Based Assay). Outside labs like Quest Diagnostics or LabCorp are capable of testing for the antibody. I have been positive for the antibody since onset. My neurologist keeps an eye on the titer to see what if any impact, Rituxan has on it. My last three results via the ELISA testing method processed via an outside lab, were 70.0, 76.9 and 63.5. That being said, my last test which was done recently was submitted to the Mayo who now use the CBA.



          NMO Blood Tests/Correction.

          I meant CBA (Cell Binding Assay) and not Cell Based Assay.

          Sorry for the error. I just caught it.


            Thanks, Grace! Your posts are very, very helpful.