Aquaporin-4 antibodies and disease certainty

Hi, so in my experience I had a few blood tests and a spinal tap, MRI which showed inflammation and I was diagnosed with MS first but then they decided to do the test for AQP4 antibodies, and they were present and then I was diagnosed with NMOSD. Most of the time, if you have this antibody (according to my neuro) you have NMOSD.

I have been aquaporin antibody negative but was diagnosed based on clinical criteria but now they’re confused as to whether it is NMO or late onset MS (I was 60 when diagnosed). I guess that’s why they call it NMO Spectrum Disorder as some people remain negative even to the newer MoG antibody testing. It started with encephalitis then got optic neuritis attacks, then lesions in brain, spinal cord. My neurologist sent me to a specialty center and they agree with the diagnosis of NMO clinically. My spinal fluid shows inflammation but no MS protein patterns. Medicine is often not clear cut but I almost wish I had a clear blood or spinal fluid test for one or the other. I guess “proof” is somehow more reassuring than “guessing”. I still have some docs say I’m fine since the blood and spinal fluid negative for either NMO or MS. That attitude really doesn’t help when one has documented visual evoked potentials of optic neuritis, MRI documentation of lesions, major clinical deficits, and my spinal fluid not normal even though not MS pattern… thankfully my neurologist and primary back me up so I don’t feel lost, wondering if I’m “imagining” all these things that have happened since the initial encephalitis.

And in answer to the post asking if AQP-4 levels drive disease pathogenesis, as an MD myself (neuropsychiatrist), my reading of the literature indicates that is not necessarily so…. I have the opposite (negative tests, disease progression) and the testing still remains in its infancy. So the answer is, docs just don’t know yet… we’re still learning. From my practice of yoga and meditation since age 16 (has saved me from worse deficits I truly believe), I know that even the best doctor or researcher cannot always predict with certainty disease progression or remission. I was taught by great mentors in medicine to never tell a cancer patient they had x months to live or anyone their disease was absolutely fatal. No doctor can predict that… I have seen stage 4 cancer patients go into full remission, MS patients recover function, etc etc. The human body is a wonderful and complex interconnected system. There is still so much we do not know. The brain is still very poorly understood in medicine- too complex and remarkably unique in each individual. The power of the mind over the body is a great force to use in healing. Although in posts here I have talked a lot about my frustration, negative experiences with this disorder whatever one wants to call it, I strive everyday to experience something beautiful, positive small as it may be… a sunny sky, a good day when I am able to walk in the grass barefoot and not fall on my bottom, a text from a grandkid… the small things we hold even more dear when we experience a rare, chronic illness. I have tried not to think of the future as no one knows… I focus on what I am able to do today, experience today and be grateful that I am not worse, for the function I have. In other words, don’t worry about the blood tests or symptoms you have experienced… let your docs monitor you, but just live your life as best as you can. Today, my untended and wild rose garden I used to keep so “neat, orderly, weeded” but can no longer tend has blessed me with its spring gift of hundreds of beautiful blossoms all tangled, chaotic… one big ball of nature’s beauty… more beautiful than before. Sometimes life brings its greatest gifts through difficult journeys. I have learned to let go some and just live. Although being human, there are moments when the fear, frustration, anger creep in… it’s all OK.