Let's Talk NMO Attacks and Hospitalizations
We asked three of our neuromyelitis-optica.net advocates, Mo Jones, Chelsey Tucker, and Aldelly Vasquez to describe their recent experiences with hospitalization due to NMO attacks, also known as relapses. This is the first of a three-part series that will explore the topic of hospitalization. Here's what they had to say.
Describe your recent experience with an NMO attack and hospitalization
"My recent experience with hospitalization was horrible. I thought that maybe because this was the same hospital that diagnosed me and had all the records from my first NMO attack that the treatment would go smoothly but I was wrong. I was experiencing eye pain, which is a red flag for me that a relapse may be coming soon. It started the night before and got worse overnight, so I decided to head to the emergency room. I got there around 11 am. When I checked in, I explained what was going on and that I have NMO ( which they had never heard of) and then I got vitals done and I sat. For hours. about 3 hours in I finally got some bloodwork done. About 4 hours in I saw neuro who did a few quick "tests" (vision, strength) and determined that this was a relapse and that I should be admitted for treatment. at the 8.5 hour mark, I was finally put in a room in the ER ( all this time I had been in the waiting room, or the triage room), and then I got an MRI (longest 2 hours of my life). Then about 2 hours after that I got to a room. The doctors that I had provided very lackluster care. They put in an order for me to see the neuro-opthalmologist, but no one ever took me to see them. I did receive 3 days' worth of steroids. The treatment was so bad that I begged to be sent home, and then I was sent home with an infection that was never addressed, because in their words " Since I was exhibiting no symptoms, there was no need to treat it". I wound up back in the ER 4 days later for treatment of the infection."
"My most recent hospitalization was in October 2021. Due to Covid cases being exceptionally high in our area, I opted to navigate the emergency room alone to avoid exposing my husband to any potential germs he could possibly bring home to our young children. As soon as I got out of the car, I felt a sense of dread wash over my body and braced myself for what I knew would likely be yet another traumatic experience. The rapidly deteriorating condition of my eyesight further amped up the anxiety I felt as I made my solo entrance through the doors of the ER. Gratefully, I was immediately greeted by a nurse who took my temperature, then asked the reason for my visit. I told her that my pupils were taking turns dilating at random and that my eyesight was extremely blurry and getting worse. From there, I was met by a very kind nurse who guided me to the waiting area outside the triage unit. She told me that when it was my turn to be seen, she would personally come to get me and walk with me so that I didn’t trip on anything or anyone. Her sincere kindness and empathy during a time when I felt terrified, disoriented, and vulnerable is something I will always remember.
By the time I was finally able to be examined by the ER doctor, my sight had all but disappeared. I was functionally blind in both eyes and extremely sensitive to light. Fortunately, or unfortunately (I still can’t decide which applies), I am no stranger to losing my eyesight, and I was quick to mention the severe NMO attacks of optic neuritis I’ve had in the past, along with my diagnosis of Neuromyelitis Optica Spectrum Disorder (NMOSD). I voiced to the attending physician that the pain and vision loss I was currently experiencing felt nearly identical to every event of optic neuritis I’ve had in the past. As is the case with many physicians, NMOSD was not a diagnosis he had ever heard of before. After completing an eye exam, the doctor brought in additional physicians who were also unfamiliar with NMOSD. They each took turns asking me additional questions about my medical history and inquired more about NMOSD and what kind of treatments/medications had worked for me during previous NMO attacks. After consulting with my treating neurologist and the neurologist on call at the hospital, a treatment plan was developed, and I immediately began receiving IV steroids in conjunction with IVIG. I spent 5 days in the hospital and was continually impressed and refreshed by the care I received."
"Ever since being diagnosed with NMO, my hospital experiences have never been the same. Prior to being diagnosed, I was treated according to how I looked at that moment. After being diagnosed I’m treated like an alien from outer space as if I had three heads. It’s so frustrating on so many levels going to a hospital with an invisible disease.
I was recently hospitalized for spasticity and was explaining to my attending nurse that this has happened before. That I need a certain medication to help calm my body that was painfully spasming every 45 seconds as if my whole body was about to give birth. Painful muscle contractions go up and down my body from my neck to the throughout my torso down to my toes. The nurse attending played it off with “yea ok, I’m sure” sarcastically, insinuating that I’m lying as I’m crying from the pain and walked away. As I’m literally in tears and looking like a dead log on the stretcher the nurse finally comes in the room. Her attitude changed, she was much nicer and even asked “What is Neuromyelitis Optica? How did I find out? When was I diagnosed” and so many more questions. In my painful spasms, I respectfully answered, “I’m sorry but I can’t really answer those questions at the moment, for you can see that I’m trying to breathe through the painful spasms.” At this point, I was frustrated and mad. I was only taken seriously that I have neuromyelitis optica after she read my charts, and the nurse felt silly for not believing or knowing my diagnosis."
Want to share your experience with hospitalization? Have any questions for our advocates? Leave them in the comments!
Were you misdiagnosed, prior to being diagnosed with NMOSD?