Doug and Kim, patients with neuromyelitis optica spectrum disorders, describe the types of symptoms that prompted each of them to seek an evaluation by a neurologist for an eventual diagnosis of a neuromyelitis optica spectrum disorder.
June Halper, MSN, APN-C, MSCN, FAAN: This is something that’s more widely known, and we hope this type of program will help disseminate this information. Doug and Kim, you have both been diagnosed with this disorder. Kim, when did you first experience symptoms, and what were they?
Kim: I first experienced some symptoms in August 2020: the loss of eyesight in my right eye. I went to the doctor right away, but at that time, it was just thought to be optical neuritis. Because I was healthy, they had no idea. A few tests were run, but I was still trying to find out exactly why the optic neuritis. Fast-forward to February 2021. I had a severe attack that started with my feet—my feet were starting to feel hard—and traveled. I ended up going to a different provider. At that time, I was treated right away. They said, “This is something a little more serious than what you may have experienced a few months ago.” With those symptoms, it traveled from the feet. I also have a TM, or transfers myelitis, so it was traveling up my legs and around my body. Those are the symptoms and things that I’ve experienced.
June Halper, MSN, APN-C, MSCN, FAAN: Doug, have you also had a similar experience, or was your diagnostic journey a little different?
Doug: My journey was a little different. I started having symptoms in the fall of 2016. It started with a pain in the back of my head. I wouldn’t quite describe as a headache, but the pain was giving me a problem. Shortly thereafter, I started to lose my appetite. I went through several significant rounds of nausea, vomiting, and hiccups that were uncontrollable. I went to the emergency department 3 times for these symptoms, and they shook their head and gave me different medications to try to control them. Of course, at that time, I wasn’t thinking of a neurological issue, and neither were the doctors.
Near the end of 2016, I started to have some tingling on different parts of my body and different sensations of hot and cold. I remember picking up my card and chocolate milk out of the refrigerator. It was warm, so I put it back, and it was cold in the other hand. I noticed that difference starting to happen, and I went to see my primary care physician. He helped me line up with a neurologist quickly. I went in to see the neurologist, and I still had tingling but nothing terribly significant. She set me up for an MRI about 2 weeks later. During the last week before the MRI, I went from walking to being paralyzed on the left side of my body, to the point where I couldn’t walk and couldn’t even get off the couch. It was a difficult time for me and my wife.
The day that I went for the MRI, they did a lumbar punctured at the same time to test for MS. I have 2 siblings who have MS, and that’s what I thought this was. But while I was having the lumbar punctured, the doctor called my wife, who was in the waiting room, and said that we have a hospital bed set up for you at a different hospital that specializes in neurological disorders. I went from having some odd symptoms, not knowing what they were and having a hard time pinning them down, to some real significant paralysis and issues that I assumed would dissipate once I got those high doses of steroids, which my siblings have when they have those issues.
June Halper, MSN, APN-C, MSCN, FAAN: There were different challenges for both of you, but the same conclusion. It’s interesting that you both took different routes.
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Transcript edited for clarity.