My Diagnosis Story

Nancy Robb: My Diagnosis Story
Nancy Robb Lupus

I am a sixty-one year old mother, grandmother, and wife who has swirled around in the the world of rheumatology since I was diagnosed with lupus when I was sixteen. Changes in doctors and changes in my condition often brought changes to my diagnoses - from lupus to mixed connective disease, back to lupus, to undifferentiated...

View More

What symptoms led up to your diagnosis?

I felt like I had been run over by a truck and it hurt to move. Fevers would spike two or three times a day. I had no desire to eat and no energy. All I wanted to do was sleep. I was so cold all the time. My hair started coming out in clumps with scalp attached. I was sixteen.

What tests did your doctor do, and what was this experience like?

In the mid-seventies, lupus wasn't much understood. I went from rural hospital to big city hospital where I did weeks of testing and recieved a number of different diagnoses. From there, I went to the National Institutes of Health in Maryland. To a teenager, it felt endless, but there was so many new experiences and so much to see and learn.

Upon learning about your diagnosis, what happened next?

After a couple of months, I was settled on a treatment plan of prednisone, aspirin, and Mylanta and sent home. Decades later, I'm writing about my experiences, hoping someone will be encouraged. My story played out radically different from everyone's initial expectations.