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You know that crazy gut feeling?

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    You know that crazy gut feeling?

    The one telling you that your neurologists' refusal to investigate NMO may not be the right answer? The one that makes you seek out further specialists, like the neuro-ophth and an MS specialist?

    I was rediagnosed with an NMOSD today by the MS specialist. He said you can call it that or spinal optic MS, but that I'm in some middle ground between the two diseases, meaning an NMO Spectrum Disorder. And I'm to stop Tecfidera immediately and prepare to start Rituximab.

    I'm both relieved and terrified all at once. I guess I was in a sort of limbo all this time, and only really caught on this year.

    Anyhow, if you think something is off, listen to your gut. You may not be right, of course, but keep on investigating until it makes sense. If I had stayed with the neuro who diagnosed me with MS, who knows how blind I'd be before we figured this out.

    Hello Alicious,

    If you have been diagnosed with NMOSD, it is not Opticospinal MS nor is it in between MS and NMO, rather it is a limited or abortive form of NMO. The limited or abortive forms include, seropositive (occasionally seronegative) relapsing TM/LETM *or* seropositive (occasionally seronegative) relapsing ON, but *not* both. In addition, many cases of Asian Opticospinal MS (which differs from classical western MS) are found to actually be NMO and are included within the NMOSD.

    NMO and NMOSD require a totally different treatment from that of MS. The MS CRAB drugs are not recommended and the interferons (particulary Rebif) can in fact, make it much worse. NMO requires immunosuppression while MS requires immunomodulation.

    Commonly used medications are Imuran (azathioprine with/without prednisone), Cell Cept (mycophenolate mofetil), Purinethol (mercaptopurine), IVIG, (intravenous immunoglobulin), Methotrexate, Cytoxan (cyclophosphamide), Rituxan (rituximab). There are also some who use monthly Pulsed IV SoluMedrol, and some who use monthly Plasmapheresis.

    I'm very curious as to why your neuro has chosen to prescribe Tecfidera as it is not one of the recommended NMO treatments and I am not aware of any other NMO patients who are using it.



      Now I KNOW I need stronger glasses.

      Hi Again Alicious,

      I just re-read your post and realized that I had misunderstood you. I misread it and thought you were preparing to start Tecfidera, and was shocked. My eyes frustrate me so much! Ugh!

      About Rituxan (Rituximab). I've used it now for over seven years and it's been a very good treatment for me. I've only had two mild relapses (both ON) since starting it. There have only been minimal side effects, including a bit of increased clumsiness and fatigue for a few days.

      Your neuro will monitor your CD19 (Rituxan is Anti CD20+ and reinfusion is recommended once the CD19 rises to a level of .1%) via the Lymphocyte Subset Panel 1. I have a rather quick cell recovery rate and have relapsed while my counts were at 0% and 0 absolute so am infused more frequently than most (every three months).

      I wish you the very best of luck with Rituxan and hope that it works as well for you as it has for me and many of my NMO friends.



        Alicious, just wow and I'm so glad it was caught! I suspect there are more "ms" cases out there that are actually nmosd, now that I've looked into it. Scary thought when the treatments are different.

        I'm sorry for your dx, and proud of you for keepin' on when something wasn't gelling for you. Your post was one I had to read this morning.


          Aspen, thanks. My understanding is that a hefty percentage of NMO/NMOSD cases are misdiagnosed, and in my case, it would not have been caught if I hadn't pressed. To be honest, I was expecting the MS specialist to tell me it really was MS; this was a surprise. I just had to push until I got an answer that made sense.

          And thanks, Grace! I'm seeing an MS specialist at the Rocky Mountain MS Center, and this is exactly what he told me and wrote down for me regarding the phrasing/name of the diagnosis. He even drew me a little Venn diagram to describe where I fit. I don't think it's that he thinks I have both, it's that my presentation fits in between the two diseases, with characteristics of each (my MS presentation is very, very atypical), so we are treating it with medication that is known to work for both diseases. My guess is over the decades as they tease apart the various NMOSDs I will have my own actual disease definition, but until then, seronegative NMOSD it is.

          I realize this conflicts with what you are saying, and I know that you know your stuff, so for now I'm going with what the specialist says, although when I see him in 3 months I will be quizzing him about it. Thankfully, he likes questions. And yes, he told me to stop Tecfidera immediately, and the Rituximab authorization is in progress. I very much appreciate you telling me about your experiences with it; it's a very worrisome med to start because it is hard to find information about, being a limited patient pool.


            Hey there Alicious,

            Actually, I agree with your specialist. The term NMOSD is often used to refer to those cases that are still kind of murky.

            How soon will it be before you start Rituxan? Most of my NMO friends who are using it have had relatively easy experiences with it, just as I have. What's nice about it, is that I go in every few months for an infusion and then don't have to worry about it for awhile. Whenever I was still using one of the oral medications I had those moments of *Did I take my pill, or didn't I?* and I would end up stewing over it and feeling anxious. Now, I just go in to the infusion center, sit down, and in a few hours I'm done.

            Keep me posted,

            P.S. There's a mini NMO conference sponsored by the GJCF in Colorado this month. It'd be great if you could attend. The info is posted a the site.


              Funny you should mention the patient day--I just received a call from the U of CO Hospital extending an invitation and wanting to know if I'm interested in participating in research. That took all of 24 hours. I very much appreciate you mentioning it as well; I'm hoping it it will be useful, as while I am a decent googler, getting quality information from the source with access to questions and patient perspectives will be invaluable.

              That being said, I sort of feel like an impostor. What I mean is, I clearly don't have classic NMO, and what I do have is so murky that I worry that I won't be welcome, which is ridiculous and probably some flavor of denial as I process a diagnosis change. I had MS (in theory) for nearly 4 years, so this is a lot to wrap my mind around.

              And I am indeed murky. I really do present as both, which doesn't mean I have both, just that you can make a case for either only with significant atypical features either way, hence the middle ground until medical science has a better definition of what specifically drives my disease. I meet the McDonald criteria. I also get recurrent, sometimes bilateral painless ON with poor recovery and very little other activity (although I have a lesion that is 17mm/2 vertebrae in my c-spine, so shorter than LETM and still much larger than typical MS). I also have oligoclonal banding, yet pretty much no brain disease activity since diagnosis, and what I have is pretty minor (10-15 lesions). I've now failed 5 MS meds. It and more all adds up to a heap of confusion, but I'm grateful to have a neuro who actually investigates instead of brushing me off and letting me slowly go blind.

              Insurance approval is in the works, and NMOSD is my formal diagnosis, so we're hoping in a month or so to begin Rituxan without too much insurance hassle. I'm really glad to hear that you and your friends have had an easy time with it. Most drugs sound spooky when you read about them, and this one most of all of the ones I've taken. I am THRILLED to not have to remember to take pills anymore; it's the little things, I guess. I always wonder if I actually remembered, too!

              Again, I appreciate your support more than I can express.


                Hi Alicious,

                I think that going to the conference would be very beneficial for you. I had considered flying out to Colorado to attend, as I have friends in Denver who will be going. I'm very partial to Dr. Jeffrey Bennet and have had the privilege of hearing him speak many times in the past. At any rate, I've decided to wait until March 2015 when the big conference will be held in Los Angeles. It's such an amazing experience and every expert who is an expert attends. It also gives our core group of patients the opportunity to catch up with each other. It would be great if you could attend. I can promise you that you would be welcomed with open arms. :-)



                  I've heard good things about Dr. Bennett; I am now even more interested in hearing him speak.

                  I wish you were able to attend the meeting this month, but completely understand why you are waiting for March. I don't believe I will be able to make it then, but maybe 2016!


                    Hi Alicious,

                    Were you able to attend the mini conference in Colorado? I have a good many friends who attended one of whom had a presentation. I hope that you were able to attend and that it was beneficial for you. Would love to see you at the GJCF NMO conference in Los Angeles in March. They'll be offering travel grants. I hope you can come.