Let's Talk NMO Attacks and Hospitalizations Part 2

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 second of a three-part series that will explore the topic of hospitalization. For the first article in this series, click here.

Was this most recent hospital stay similar to your past experiences with hospitalization?

Mo Jones

"I feel like the treatment that I received was similar to past experiences. I never feel like there is a sense of urgency, even when I have come in with chest pain, it's always a game of wait and sees. I feel like they see that I am a 'frequent flyer' and the urgency of my visit seems to go out the window. Many times I will choose to go to the ER because I know that I can be seen faster because lately with COVID primary doctors are booked up. I sometimes feel that when I come in and I am experiencing pain, they treat me like I am a drug seeker. In reality, even though I'm in pain, pain medication is usually not my priority, and I'm not requesting it, I'm just requesting a way to stop it. If medication is the suggestion I will take it, but I'm usually not the one that will ask for it unless the pain is just that unbearable."

Chelsey Tucker

"Absolutely not. Nearly every experience I’ve had in an emergency room or hospital setting has been negative. I’ve accumulated 14 years of trauma and horror stories that have made it very difficult for me to associate the emergency room or being hospitalized with anything remotely close to positive. The negative emotions that I’ve related to emergency medicine have often made it difficult for me to seek treatment in emergency situations involving sickness or during an NMOSD attack. I’ve experienced numerous instances of misconduct and unsanitary practices at the hands of medical professionals while hospitalized. There have been times I’ve required assistance to walk and have waited upwards of 6 hours for a nurse to accompany me to the restroom. I’ve changed my own blood-stained bedsheets after numerous mishaps from unsuccessful blood draws and blown IV sites. There was even a time when I wasn’t checked on overnight and an entire bag of saline was pumped under my skin instead of in the vein of my arm because nobody was aware that my IV had blown. While not life-threatening, it was very uncomfortable and took 3 days of rotating cold compresses to allow the fluid under my skin to dissipate. As unfortunate and disappointing as those experiences were, they pale in comparison to the unbelievably horrifying experiences I’ve had in the emergency room."

"Living with NMOSD has often meant that hospitalizations are necessary and unavoidable. In most instances, to be hospitalized and treated during an NMOSD attack, I’ve first had to go through the emergency room to be evaluated by the attending ER doctor. Keep in mind, I’ve never seen the same ER doctor twice, so while I may not be a stranger to the ER, I’m always a stranger to attending physicians. If I’m seeking emergency treatment for something uncountably related to NMO, chances are it’s an attack of optic neuritis, or issues involving my brain stem. At best, I arrive with blurred vision and eye pain. Worst case, I arrive disoriented, functionally blind with an unreasonably high heart rate, moderate fever, paralysis, muscle spasms, and uncontrollable vomiting. I have a complicated medical history that spans over 14 years and includes a saga about the time I was misdiagnosed with multiple sclerosis for 10 years, but later found out that what I truly have is a rare, often unheard-of disease called neuromyelitis optica spectrum disorder, or NMOSD. I have secondary issues directly related to NMOSD, along with a few conditions that are not related at all. I take a host of medications each day, a majority that are used off-label, and I receive infusions several times a month to keep the NMOSD as quiet as possible. Add to that, I’m a 34-year-old woman with a supernatural ability to appear “ok” on the outside, even when I’m a dumpster fire on the inside. And speaking of the dumpster fire that is NMOSD, if I come to the emergency room during an attack, I’m (respectfully) not looking for answers, I just need treatment to put the fire out."

"For me, the biggest difference between a positive and negative emergency room experience relies on the attending physician’s ability to listen to what I’m saying and understand I’m not asking for anything more than help putting out the fire. Unfortunately, many of the ER doctors I’ve encountered won’t help put out the fire until they’ve added more fuel to the flames."

"I’ve grown to anticipate comments from doctors about being “too young to be so sick” and appearing too “well” on the outside to have anything wrong on the inside. If I describe a symptom in detail, it’s later followed by a comment that diminishes my experience. Further complicating the situation is that I have a disease that many doctors have never heard of before. I’m usually asked to explain what NMOSD is, how it’s treated and what my experience has been like. At times I feel genuinely heard and appreciate answering questions that may help inform a doctor who was unaware that NMOSD even existed. Other times I feel like I’m being interrogated about NMOSD and my symptoms as if somehow I’m making all of this up. The same doctors who seem aggressive with their questioning tactics, are the same doctors who feel it’s within their authority to overturn my NMOSD diagnosis based on rarity alone. How can a doctor look at a patient they’ve never met before and tell them that they’re wrong? To feel as if I must provide proof of my pain to defend a diagnosis that has overturned my entire world is traumatizing."

"Equally as traumatizing as the emotional whiplash I’ve experienced are the instances inside the ER that have involved being physically hurt, or forced to endure invasive, unnecessary testing. There have been many times that doctors who are unfamiliar with NMOSD have flat out refused to consult with my treating neurologist. Rather than making a quick phone call to get his medical opinion, they opt to perform new testing and procedures before authorizing treatment. One of the most painful examples of being subjected to unnecessary testing was during a time when I was experiencing a severe attack of optic neuritis. I knew it was optic neuritis, and once it was confirmed by the ophthalmologist in the ER, I thought I was all set to begin high dose IV steroids. Instead, the physician overseeing my care insisted that a lumbar puncture be performed before starting treatment. I’d had a lumbar puncture performed before, but never during an NMOSD attack. I didn’t understand what he was looking for, or why this test was necessary. I wanted to say no, but I feared I wouldn’t receive treatment if I refused."

"The same doctor that ordered the lumbar puncture, performed the actual procedure himself. I sat hunched over the side of the hospital bed and pulled my knees as close to my chest as I could. I was given a shot of a local anesthetic and was told to stay very still. The doctor inserted the needle deep into the lower part of my back. At first, all I could feel was intense pressure, but the pain quickly escalated from there. The doctor was having a hard time accessing my spinal fluid, so he toggled the needle up and down, repositioned it in a different spot and tried again to withdraw fluid. The pain was almost unbearable. I was sweating, shaking, and thought I was going to vomit all over myself. Then, seemingly out of nowhere, I felt an electric-like jolt that went down my legs and through my toes. The lightning bolt of pain caused my legs to involuntarily jerk away from my grasp, and I felt tingles from the waist down. I was in immense pain. The numerous attempts the doctor made to collect my spinal fluid had not been successful. Rather than acknowledging my pain or taking time to explain what had just happened to my legs, he walked out of the room and I didn’t see him again. A different doctor took over from there, and within the hour I had been given my first dose of IV steroids. It was later explained to me the cause of the shock-like sensation in my legs could likely have been from the lumbar puncture needle grazing a nerve in my back."

Aldelly

"It took various times of me going to the hospital, and still to the date, there are medical professionals that are curious about the diagnosis I live with. It’s only natural that they would be, but I wish they would be more open-minded and respectful. I often wonder why pay so much money in school and not know about Neuromyelitis Optica, but then again there are new diseases being discovered every day! When I started comprehending the rareness of Neuromyelitis Optica, the more I understand that others really don’t know about invisible diseases. It doesn’t fail to have a similar experience every time I go to a hospital. No one ever knows what NMO is and thinks I’m. making up lies."

Do you have an experience with hospitalization that you'd like to share? Tell us in the comments