Maureen Mealy, RN – Johns Hopkins University:
This question comes up particularly with patients who have been very savvy and done some research online, and have presented with some kind of central nervous system demyelination or inflammation that suggests that they have something going on in their brain, spinal cord, or optic nerve. And oftentimes it’s our patients who will present to their neurologist with the idea that they might want to consider sending this test.
In my personal opinion, I believe that anyone who has presented with any kind of central nervous system inflammation ought to have this antibody test sent, and the way to do that is really to discuss, have a very open dialogue with your neurologist. That’s very important, and oftentimes utilizing resources that different organizations, including the Guthy-Jackson Foundation, provides is an excellent way to be able to present your information to your doctor. The value of having this test is such that it dictates treatment and allows for a change in treatment much more than any other test that is sent in say an MS presentation.
And so I would suggest that actually anyone who is being considered for multiple sclerosis ought to have the NMO-IgG antibody test sent, and not all doctors are aware of the different types of presentations that can exist in NMO. And if there’s not a longitudinally extensive transverse myelitis or optic neuritis, then oftentimes they don’t understand that this could still be NMO. We’re finding out so much more information about the different presentations in the brainstem and even in the cerebrum that we just didn’t really necessarily think of NMO just several years ago.
So I would say that we’ve come so far, but we have so, so far to come in terms of education, particularly of community neurologists, and of all of our patients as a whole.