I have had issues since I was a child. I was sick often. As I got older and went to the doctor by myself, I was called a liar. Nurses refused to believe I had a sinus infection once a month; that I had a respiratory infection every few months. Then one year I had an abscessed tooth. It burst. Though the dentist said I would be fine until my appointment, I wasn’t fine. The gunk from the infected tooth took over my immune system.
My boyfriend and I were supposed to see The Hangover 3 that weekend. But I felt bad and didn’t want to go. He knew it was serious if I was skipping a Bradley Cooper movie. The next morning I couldn’t feel my hands or my feet. At the ER, the doctors were amazed when I had no reflexes in my hands and legs. They did a lumbar puncture and then an MRI. They said I didn’t have MS and then threw me out of the hospital even though I did not want to be discharged. The next day I passed out and was back in the hospital. They kept me for three days and found nothing even after running neurological tests. I had trouble using my feet but since they physically worked, there was nothing they would do.
This mess went on for years. I never felt well, my arms and legs would go numb, some days I could barely walk. And no one in the medical field cared. I got a neurologist and a rheumatologist locally. They both found nothing and quickly wrote me off.
I got lucky then getting an appointment at University of Alabama Birmingham. I got to a rheumatologist who took me seriously. He had worked with an immunologist closely and sent me to him based on my symptoms and medical history. That immunologist was the first person to say they could help me. I did my vaccine tests but made a few antibodies and my Igg numbers weren’t low enough. I had to leave for six months and get sicker. In the meantime, they did genetic testing.
Six months later, the antibodies from the vaccine were mostly gone, my numbers were the same, but my DNA testing had come back and I had two of the three markers for hyperglobulinemia. I was finally diagnosed with an immune deficiency. It took close to three years to get a diagnosis and a treatment plan.
I started getting IVIG plasma infusions because my body didn’t make enough antibodies. Walking became easier because I wasn’t having an autoimmune reaction; what little white blood cells I had had been attacking my joints and we saw a better response in my kidney disease. My entire life changed. I was 90 percent who I used to be. And guess what? I am so excited! I won’t be 100 percent of what I used to be but now I can be 100 percent of what I am.
But my diagnosis is not who I am. It’s not my whole story. I love to read and write and go for walks with my cats. I work for nonprofits trying to make the world a better place. I love pop music and horror movies. My rare, invisible illness may dictate how I do somethings in my life but it does not stop me from being me. I am a person, not just a diagnosis.
I was diagnosed with CMT and scoliosis when I was 16, I’m now 52. When I was first diagnosed my doctors told me that I...