Robert Naismith, MD – Washington University:
For NMO, it’s a really scary disease for patients, because they’ve experienced relapses that put them in the hospital and rehab, and can take months out of their lives to come back. So when patients with NMO go to the primary care physician in the emergency department, sometimes they say that people have a blank look, that they don’t know that disease, and I think that’s fine because it’s a rare disorder and there’s a lot of rare diseases that we can’t know that much about. But I think the general attitude should be that, “I don’t know a lot about this. We’re going to work together to figure out what to do, and I’m going to listen to you in terms of what needs to happen if you’re having an issue, so we can work with your neurologist to get it solved.”
For a well visit, I think it’s important to make sure that the patients are adherent to their therapy. A lot of them are on immunosuppressive therapy and this is important to put them into remission and to prevent relapses. It’s also important to make sure that they’re seeing their neurologist on a regular basis, at least once a year, if not more frequently. Labs are a routine part of monitoring their therapies, so if blood counts or liver tests need to be done, those should be copied to the neurologist, and there should be good communication between the neurologist and the primary care physician.
If patients are having a problem, it’s important to understand that NMO can really disable a person quickly. Within a matter of hours, the inflammation can really take hold of the nervous system and create problems with vision and walking. So I think time is of the essence when dealing with somebody with a new neurologic problem with NMO. It’s important to get the neurologist involved and to potentially have them go to the emergency department promptly if there’s any concerns for relapse.
In terms of symptoms that patients experience, it’s also critical to know that pain is very, very common in NMO. A lot of my patients have pain in a radicular pattern, meaning along the abdomen, or into the leg. And this frequently gets misdiagnosed as sciatica, or gallbladder disease, or herniated disc in the lower back. And it’s important to realize that this is pain most likely coming from the spinal cord, and that the neurologist and a primary care physician should have an alliance, in terms of who’s prescribing the pain meds and refilling those, to make sure that it’s all coming from one person. And to realize that a lot of the sensory symptoms that patients experience may in fact be neurologic in etiology.
