Nursing Homes, Rehab Centers, and an Accurate Diagnosis
Last updated: June 2022
After spending three months in the hospital, I was discharged and sent to a nursing home. Thank God I was only there for a week, because I hated that place. I was sent back to the hospital when I developed a temperature of 105, and I stayed there for another week.
A new diagnosis
As I was waiting to be transported to the new nursing home, a team of physicians came into my room and asked if I remembered them from my time in the ICU, which I did. They then asked if I'd been given a diagnosis, and I replied that I had been diagnosed with lupus. They then told me that I had Devic's disease, which I'd never heard of before. They gave me some literature to read before they left.
She told me they were wrong
When I went to my follow up with the rheumatologist who diagnosed me with lupus, I told her what the team of doctors said; that I had Devic's disease. She told me that they were wrong and, at this point, I didn't know what to do or believe because I had been diagnosed with several conditions, all of which were apparently misdiagnoses.
I took matters into my own hands
Fast forward in time, and I was in the nursing home until the end of the 2013 before deciding to check myself into a rehabilitation center just after the new year. I knew that I needed to be in a place where I could get more therapy, and being in the nursing home certainly was not doing that for me! I stayed in that rehab center for 3 weeks and, during my last weekend there, I was able to move my feet up and down; you would have thought I hit the lottery!
It was time to focus on me
Once I'd reintegrated back into society, I couldn't help but to feel sad and depressed and, at times, angry and in disbelief. I was still trying to process how all of this happened to me while I laid in my bedroom in a hospital bed that we were renting. One day I said to myself "I’m about to take my care into my own hands." I'd helped my daughter with her therapy, and I know I took such good care of her; I now needed to apply that same energy to myself.
Second, third, and seventh opinions
I started to see multiple neurologists to be sure I was under the care of the right one. Many of them promised that I would never experience another attack. After hearing that, I would leave and say to myself "I don’t believe you" and I would move forward and make another appointment with a different neurologist.
Keeping my eye on the prize
I also started setting goals, and had my aide help me with all types of stretches and other movement goals that I set for myself. During the summer of 2014, one of my friends' coworkers at the Cincinnati Children's Hospital Medical Center gave her a phone number to see a neurologist when something similar happened to him. I decided to also call, and had to wait six months to see this neurologist.
The day finally came
I finally saw him in December 2014; I'm glad I waited because I almost canceled the appointment. I remember being in his office for what felt like forever. Once I finally saw him, he had me continuously repeating what had happened to me. I was his last patient of the day.He told me what he needed from me and two months later he called me back.
An accurate diagnosis, years later
During that time, he said he kept running my blood work to detect NMO, which he said he did detect. As I listened to him explain what NMO was, it brought me back to the conversation I'd had with the other doctors who told me I had Devic's disease. I decided to ask him whether Devic's disease and NMO were related and he told me they were one in the same! After all that time, I realized that the team of doctors who came into my hospital room were right.
It started 3 years prior
This new neurologist told me that he spoke with the rheumatologist and told them that, even if I did have lupus, that wasn't what caused the paralysis, and the treatment that I was then on wasn't strong enough to treat my condition, which could cause me to relapse and lose all of the progress that I'd worked so hard for. He also told me that, when I started getting sick in 2012 with uncontrollable vomiting, that was the start of NMO for me. That was almost three years prior.
It was all a lot to process
I had mixed emotions when I finally got the correct diagnosis; I was happy to finally know, but I was sad that I had to live with this nasty disease. I am so glad that I didn’t stop and accept the first diagnosis that I was given. I had been wrongly diagnosed so many times, and had I not gotten a second, third, fourth, and fifth opinion, I may not be here now to tell my story
I'm getting there!
Today I am stable; I haven’t had any flare ups since I was accurately diagnosed and on the right treatment. I can walk with a walker, and everyday I'm getting stronger. I have been going to therapy two times a week since 2014! It's definitely been a long road to recovery.
Typically, how much time passes between attacks for you?