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Possible NMO

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    Possible NMO

    I was diagnosed with MS more than 10 years ago. Now I have a new neuro and he wants to change my dx to NMO because of limited brain activity compared to c-spine and optic nerve. I know there are others on this site who have NMO. I must say I am quite scared and would appreciate any input you can give me. My "MS" began with an attack of ON followed several months later with TM. MRI showed large long lesion in the c-spine with few non-specific white areas in the brain. The last 4 years have felt like a slow downward spiral, but lately has been picking up speed. My last MRI showed more activity in both brain and spinal cord. I was negative on NMO blood test. Anyone else have their dx changed? How did your NMO journey begin? How is it progressing? Any help is appreciated.


    I have had NMO since 2005 diagnosed via the Mayo Clinic's original test for the NMO IgG (also known as the Anti-Aquaporin-4 Antibody). My first attack happened literally overnight---I went to bed feeling normal, and woke up paralyzed. The local hospital had no idea what was wrong with me, so transferred me to the University of Pittsburgh Medical Center. Initially, they misdiagnosed me with Idiopathic TM. After several months in the hospital and rehab, I returned home only to be hit eight weeks later, and much harder than the first time. Again, I was transferred to Pittsburgh and handed over to an excellent neurologist who subsequently diagnosed me. I have been with him for ten years now and am currently neurologically stable on Rituxan infusions done every three months.

    Re: brain lesions. While the research community previously thought that NMO spared the brain, they have known for some years now that such is not the case and that there is a percentage of patients who will eventually develop them, though they are not in a pattern that is consistent with MS. Two recent studies put the estimate of patients who would develop brain lesions at 62% and 60% respectively. This issue is addressed in depth in the new 2015 NMO Diagnostic Criteria, which was developed by an international panel of experts.

    For the best information on NMO, please consider visiting the Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research. They have donated over $40,000,000 dollars to the research effort and are funding many important research studies and clinical trials. They also have an excellent NMO Library at the site. You can find the answers to most of your questions there.

    There is also a very good support group at Facebook. It tends to get technical at times and the threads mover rapidly, but you'll find an excellent source of support there. If you would like to communicate with others who have NMO or are still in the diagnostic process, let me know and I would be happy to direct you to the group.

    I agree, it's a frightening diagnosis. The best thing that you can do for yourself is to become educated via the scholarly research literature. While anecdotal information from other patients can be helpful, it is often not factual despite being given with the best of intentions.

    I wish you well in your NMO journey. It's a very serious disease but it can be managed.

    Grace (NMO+ since 2005)


      Hi freedom1:

      It's good that your new neuro has an open mind and is considering the possibility that you have NMO rather than MS. One of the leading neurologists in NMO research said years ago that many people with NMO are misdiagnosed with MS.

      That being said, there are some things you've said that should have made your neuro think about NMO, but there may still not be enough evidence for your neuro to change your diagnosis. If your neuro had even 51% confidence that you have NMO, he should have proved it by immediately starting you on an immunosuppressant drug. If he hasn't, then it shows that he's not sure, and that might be because some of what's happening is not consistent with NMO.

      One thing I've learned about the NMO vs. MS question is that, when NMO is misdiagnosed as MS, the MS the doctor diagnosis tends in ways to not act like typical MS, but the doctor diagnosed MS anyway because he/she didn't know any better. NMO tends to act different than MS, so when MS is diagnosed instead, it's because the diagnosing doctor ignored the differences. MS tends to act like MS, not like NMO, so MS is rarely misdiagnosed as NMO.

      More activity in the spinal cord and optic nerves than in the brain also happens in MS. It isn't typical, but it does happen. So that's enough to cause suspicion about NMO, but not diagnostic.

      Another thing that's more typical of NMO than of MS is that the brain lesions in NMO are more nonspecific and don't look like MS lesions. But nonspecific might also mean that there's something else going on that's nonspecific, so again a diagnosis can't be made from nonspecific brain lesions.

      ON and TM are certainly more typical of NMO -- which is how it got its name -- but MS still can't be ruled out because that presentation, though more atypical, can happen in MS.

      What is absolutely NOT typical of NMO is your "downward spiral" progression and the appearance of more lesions on MRI that, from your lack of mention, have not been coincident with unmistakable relapses. That kind of progression is typical of MS. NMO "progresses" through unmistakable relapses and does NOT tend to have slow progression between relapses, nor does it typically have lesions appear randomly and without relapses.

      So from your description of your progression, your condition is acting like MS. Bearing in mind that ON and TM can also occur in MS, those plus the slow progression between relapses points to MS and not NMO.

      MS can also have somewhat long, linear spinal cord lesions. They're less typical than oval lesions, but they're still possible. So some of the clue depends on how long your "long" lesion was/is.

      The NMO antibody test is only helpful when it's positive. When it's positive, the diagnosis is virtually 100% guaranteed. A negative test isn't helpful at all. Unfortunately, the false negative rate is fairly high -- about 30%. So a negative test doesn't rule out NMO. In fact, there are some patients with classic, unmistakable NMO who never test positive.

      Your negative test unfortunately doesn't shed any light on the picture. Your ON, TM and nonspecific brain lesions tend to point toward NMO, but don't exclude MS. It's the continuing progressive nature of your condition that points away from NMO, as it's more typical of MS. NMO isn't "progressive" in between or without relapses.

      Again, kudos to your new neuro for having an open mind. But it sounds like he needs to confer with another neuro or neuros who have more experience with NMO. There are neuros at the Mayo Clinic -- and probably at Johns Hopkins -- who will review patients' records and confer with the managing neuro about whether they feel the patient has NMO or MS. That sounds like something you should look into. It would be better if you could actually to to one of those clinics to be examined yourself, but a competent review might be able to get you a deciding opinion.

      In addition, you might consider seeing a neuro-ophthalmologist at a large medical center or specialty eye clinic that has knowledge and experience with both NMO and MS. Damage from ON in NMO looks different than damage from ON in MS, and it takes an ophthalmologist who knows the difference. Don't even let your neurologist attempt to try doing that kind of exam or figuring it out on his own. If you already see a neuro-ophthalmologist who doesn't know the difference, go see somebody else. A thorough workup by a knowledgeable neuro-ophthalmologist might be able to help determine whether you do have NMO instead of MS.

      At the very least, you and your neuologist should both go the the website of the Guthy-Jackson Charitable Foundation,, the leading NMO information and research foundation in the galaxy. You'll both learn something, and you can get help in finding where you can go for another neurological opinion.

      Good luck. I hope that you will be proactive in looking for another opinion, even if your neuro doesn't think it's necessary.


        Thank You for responding to my questions. You both have given me a lot of useful information. I have been on the website you referred to and have found a lot of information there. I am so confused right now. Some things click, others like the progression don't. I did see a neuro ophthalmologist back when this all started with the ON she said I had ON and that was as far as it went. I was in a wait and see pattern back then until the total body numbness a few months later. That was when they found the large lesion in my cervical spine, 18mm. After that all of my mri's were of the brain only.

        Another question, I realize that symptoms are a direct result of an attack, are the attacks always severe or can they be mild? I can come to terms with I could have been having "mild" attacks over the last few years, but these were nothing like what I experienced in the beginning. In the first 2 years it was as if I was having a major relapse one after the other. The odd thing is as soon as I stopped the MS meds the relapses calmed down. After that I didn't even call them attacks, it would be periods when I would say something is going on right now and it would last for a few weeks to a few months and I would be left with residual symptoms. Mostly in the form of numbness, weakness and pain.

        Might be time for a second opinion. Grace, I also live in PA, however the eastern part. Have you heard of any good doctors for NMO in the eastern half? Pittsburgh is a little too far, about 6 hrs.


          Re: a seronegative NMO IgG (Anti-Aquaporin-4) test result. The new 2015 NMO Diagnsotic Criteria has made the requirements much more stringent for seronegative NMO. It's not simply a matter of your disease not behaving like classical western MS. Much more goes into the diagnostics than that.

          Re: attacks. All of mine have been very hard hitting and have required hospitalization and in some cases rehab. For me, it's always a very sudden loss of mobility or vision. My attacks move rapidly and I am always at nadir (lowest point) within 24 hours. During my first two years I failed on treatment and had three bad attacks of paralysis and three (possibly four I'd have to check my records) of vision loss. In 2007 I switched to Rituxan and have remained on it for the last eight and a half years, only experiencing two mild attacks of ON during that time. I will continue using it for the remainder of my life or until I fail on it, which ever comes first.



            Re: NMO lesions versus MS lesions.

            One thing I forgot to mention is the issue of lesions in NMO. LETM (longitudinal extensive transverse myelitis) is a hallmark of NMO. An LETM lesion encompasses at least three full segments of cord but often much more. Also, as per the new diagnostic criteria, MS lesions are most often peripheral (on the outside of the cord) while NMO lesions are most often central (transverse and transecting the width of the cord). In addition, there is also LEON (longitudinal extensive optic neuritis) which also differs from that found in MS. Also, the RNFL (retinal nerve fiber layer) is found to be much thinner in patients who have had ON within the context of NMO, as compared to MS. Re: NMO brain lesions. The new diagnostic criteria addresses area postrema syndrome (episode of otherwise unexplained hiccups, nausea, or vomiting), acute brain stem syndrome, symptomatic narcolepsy or acute diencephalic clinical syndrome with NMOSD typical-diencephalic MRI lesions, and symptomatic cerebral syndrome with NMOSD-typical brain lesions.



              Thank you Grace. I am having the blood test repeated and if that comes back negative again I will have a spinal tap. I want this resolved asap. Deep down I think it is ms but need to know. A spinal tap has never been done my diagnosis has been on symptoms and mri. I did ask for a 2nd opinion at Drexel medical school and they concurred with the ms diagnosis. Not sure why this neuro is hung up on nmo. When I took my cd to Drexel the neuro said ms no nmo. Unfortunately he is the best without driving forever


                Originally posted by freedom1 View Post
                I was in a wait and see pattern back then until the total body numbness a few months later. That was when they found the large lesion in my cervical spine, 18mm. After that all of my mri's were of the brain only.
                18 mm is a large lesion, and can be considered large for MS. But for NMO, it isn't nearly large enough to meet the diagnostic criterion for lesion size. That's why I asked earlier how large your "large" cord lesion was/is, and why poster Grace added the post about NMO lesions vs.S lesions.

                The criterion for NMO is a contiguous spinal cord MRI lesion extending over 3 or more vertebral segments. This is an easy thing to check on your own. Get out your MRI disc and see how long -- not how wide -- your lesion is. Count how many vertebrae -- including the intervertebral disc spaces -- it crosses. It must extend at least 3 full segments. From your description of size, it doesn't.

                Measurement-wise, that's at least 40 mm. So even if 18 mm is the length and not the width of your lesion, it isn't even half as long as it needs to be to meet the NMO criterion.

                And "more activity" in your spinal cord on your latest MRI still doesn't meet the criterion for length. A spinal cord episode that would involve a lesion of that length would be very significant and would have called for a new spinal MRI, yet you didn't say you had another significant spinal cord episode. So lack of another significant spinal cord episode pretty much rules out that you've ever had a lesion long enough to fulfill the NMO criterion.

                A spinal tap might or might nor help you. O-bands can be present in both MS and NMO, or can be absent in both MS and NMO. O-bands can't be used to distinguish one condition from the other. And the spinal fluid differences between NMO and MS are transient, and are best found within 30 days of an NMO attack. So unless you've had an acute attack within 30 days of your spinal tap, there may not be any helpful information to be gained in distinguishing NMO from MS. But if you decide to have the spinal tap, make sure that your neuro knows exactly what tests to order, and consider having some of your spinal fluid frozen and sent to Mayo for NMO antibody testing (a blood test should suffice, but spinal fluid is in direct contact with your central nervous system so can also be used).

                Lastly, if you really want to get the question of which condition you have resolved by an expert, you'll have to stop putting limits on how far you're willing to travel. If you're truly motivated to get an answer, you may have to stop thinking of it as a 1-day trip to a doctor visit with a comfortable drive and start thinking of it as a multi-day trip somewhere. If you don't want to drive, you can look into taking an Amtrak train or even flying to your destination. What you're willing to do to get the question resolved tells how motivated you are.

                But again, you may not even have to travel at all. You might be able to get the issue resolved through a review of your medical records by a consulting neurologist at a major clinic like Mayo or Hopkins. Considering that your MRIs don't show that you meet the criterion for a longitudinally extensive spinal cord lesion, and considering that your progression is more typical of MS than NMO, an expert review of your records might be all it takes to get an answer.


                  Thank you for your responses. I have felt all along that this MS. Just being able to hear from you both has gone a long way towards putting my mind at ease.

                  My original doctors never felt that a spinal tap was necessary, the mri's and symptoms were enough. Also when I sought another opinion at Drexel Medical School the director of neurology looked at my disk and said no to NMO but yes to MS.

                  I may repeat the blood test and screw the spinal tap. This is the only doctor who has questioned the MS diagnosis. Maybe it is time to find a new doctor. I still would like one within a days drive. I am the caregiver for my 96 yr old grandmother and babysitter to my 9 mo old grandson. Philadelphia is a day drive.