For many with autoimmune disease, the biggest obstacle is just getting a diagnosis. A combination of the complexity of most autoimmune diseases and the tendency for patients’ concerns to be dismissed play a large role in this. Whether you are visiting a doctor for the first time since your health issues started, transitioning to a new practitioner, or getting a second or fifth opinion, the process can feel daunting and many leave feeling dismissed or unseen.
Read Meshach’s story where she shares her experience with misdiagnosis, her steps to becoming her own health advocate, receiving her Neuromyelitis Optica (NMO) diagnosis, and finding gratitude throughout the journey.
Meshach's Story
In October 2014, I was a senior at North Carolina A&T State University preparing myself for graduation. I was already a semester behind the “normal” graduation expectancy timeline and was dealing with an unknown condition. I remember waking up one day, feeling unbearably sharp pains in my right leg. I was still able to walk, so I thought I had pulled something while exercising. I didn’t think much of it, but it wasn’t going away. A few days later, the pain transferred to my left leg, so I decided to go to Urgent Care. They diagnosed me with sciatica and gave me a prescription for Adderall and Tylenol.
I felt so unseen.
I did not feel that the diagnosis was adequate. I chose not to take the drugs prescribed to me and I wanted a second opinion as I felt so unseen. As the days went on, the pain persisted; I knew something wasn’t right with my body. One night, I couldn’t take the pain anymore and went to the Emergency Room. I expressed everything that I was going through and they checked me into the hospital and conducted an MRI and multiple blood work panels. A strong opinion I hold that I will always tell people is, “if it does not feel right, never settle and always advocate for yourself.”
The next day in the hospital, doctors came back with the diagnosis that I had multiple sclerosis (MS). I still wasn’t able to fully walk without dragging my left leg. They wanted to conduct more exams and even took a sample of my spinal fluid for testing. At this point, I was thinking, “I have MS and my entire world is shattering.” My mind started being consumed with all the negative thoughts I could think of; could life get any harder? I was worried about school, worried about how my life was going to be moving forward, and ultimately feeling insecure in every way possible.
By December 2014, I had accepted the diagnosis but it still didn’t sit well with me. I was on break from school and came back home to New York where I met with a neurologist. He ran his own exams, a physical test, blood work, and provided me with steroids in the meantime in order to thoroughly examine me. I expressed a new symptom of hiccups. This was when he realized I did not have MS, and for the last time, I was diagnosed with Neuromyelitis Optica (NMO), otherwise known as Devic’s disease. NMO occurs when your own immune system reacts against its own cells in the central nervous system, spinal cord, and sometimes also the brain.
At the young age of 22, I became an Autoimmune Warrior.
With my neurologist’s help and consideration, I can happily say I am living a “normal” life (which he promised when we met) with no flare-ups. Every year I have my infusion appointment, doctor’s visit, MRI exams, and blood work done. I am a woman who believes in faith and knows that with God by my side I am capable of facing my fears and see this diagnosis as a blessing now! This blessing has led me to start my own nonprofit organization, which is a safe space for anyone, especially people of color, to share their journey without judgment, with numerous other involvements.
View this post on Instagram
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.Interested in sharing your story of autoimmune disease or chronic illness? Head over to How to Tell Your Chronic Illness Story for prompts and tips!
