I will never forget the day I was diagnosed with Adult Onset Still’s Disease because I finally had a name for what I had. For years I was labeled a “mystery” and to actually have a final diagnosis was, in itself, a great relief to me.
It all began in 1986, my freshman year in college. I remember feeling flu-like symptoms, high fever and vomiting. After missing a few classes, my friends took me to the University infirmary where my blood work showed a white count of 31,000. My temperature was over 101 degrees and I was dehydrated. They became alarmed and wanted to send me to the local hospital. I told them I would call my parents to come get me so I could be closer to home.
After being admitted at Hardin Memorial Hospital, they immediately thought my appendix had ruptured because of the high white count. After that was ruled out, they treated me for 3 days on Ceclor and Tussinex and I was discharged to be followed as an outpatient. There was never any explanation and I was eventually released from doctor’s care.
In the summer of 1992, the aches & fevers were back. At this time, I had just given birth to my second child. I was a military wife and was treated repeatedly at Ireland Army Hospital at Fort Knox. I must have seen every doctor enlisted! I developed painful, raised skin lesions on the lower part of my legs which they treated with NSAID’s. But the chills & fevers never left and my white count barely dropped. I was told I couldn’t go to a civilian doctor until one day I literally gasped my way to my car at work and drove to the hospital again. I couldn’t breathe, my chest hurt and I had racking chills that made my teeth chatter (this was in the heat of July). The chest x-ray showed fluid in the pericardial sac. I was devastated. I was only 23 yrs old, what was going on? Why was my heart all of a sudden involved? The doctor at the military base told me they could no longer help me there because they didn’t have a cardiologist on staff and that they were going to refer me back to HMH hospital for treatment.
I don’t know how I drove there, but I got to the new hospital and collapsed. The heart doc there diagnosed Pericardial Effusion but could not figure out the cause. He scheduled a catheterization the next morning. After removing 380 cc’s of fluid, I was placed in CCU for 4 days.
Then came all the other specialists. I felt like a guinea pig. They asked weird questions- Have you ever lived overseas? Ever drank un-homogenized milk? Eaten tropical fish? Been scratched by a cat recently? That’s when I began to get scared because I realized they had no idea what they were dealing with. One of the docs was even a Rheumatologist, but all I was ever told on this stint was I had low albumin, protein, cholesterol, calcium & uric acid and that they didn’t have a clue why this was all happening to me.
In November of 1994 I was again hospitalized after having a white count of 39,000. My fever was 103; I had chills and a dry, hacking cough. They began to suspect lymphoma, lupus, you name it, they tested me for it. They even ran an AIDS test. Again they consulted with the same Rheumy as before. After numerous tests & meds, they finally discharged me at my insistence. Outpatient labs were ordered and a bone marrow aspiration. They were all negative.
A few weeks later, I was back again. I had been wandering around my apartment in a stupor, half delirious from fever & pain, soaking my clothes when I slept from the sweats, vomiting up to 5 times a day and sometimes falling down because my knees could not support me. The Rheumy had tried everything finally telling me to take 16 aspirin per day, which did not help. I had a CT scan in December that revealed a few enlarged lymph nodes but it wasn’t until Feb. that a new CT showed a mass of them, some as large as golf balls, in my abdomen. They immediately scheduled me for an open biopsy, sent samples to U of L, UK and Vanderbilt. I came out of surgery with a scar bigger than you can imagine, an NG tube down my throat, and they told me after 13 days of this that everything came back negative! I looked at my doctor, saw what had happened to me, the weight I’d lost, the unnecessary surgery, and said, “I am going home.” I was told that if I left the hospital I would die. I told them if I stayed, they were going to kill me.
After going home I made an appointment with my old family doctor. I took all my records to him and begged him to help me. He called the University of Kentucky medical center and got me in. After one day of talking with interns & specialists, Dr. Fred DeBeer, Chief of Rheumatology , walked into my room and said, “I know what you have.”
I started laughing, because after 8 years of guesses and being a “mystery”, this guy thought he knew what I had after 24 hrs? He explained Still’s to me & told me I could live a normal life with the right meds. It was still a long road from there. It was a good six months or more before they finally found the right combo of meds that worked for me I’ve had several flares since then, but at least now I know what I am fighting and the doctors know how to treat it.
The flares are not always the same. But, generally speaking, there is a sudden weight loss, swollen glands, night sweats, fevers, chills and lots of pain. Most of my problems have been systemic, like the Pericardial Effusion. But the disease seems to affect my whole body. I still see my cardiologist every six months and my Still’s doc every month, or more often if I am flaring. I take my medicine and rest a lot because the fatigue is sometimes over- powering. I am now taking 15mg Pred, MTX, Remicade, Tramadol for pain, potassium, & Ritalin for daytime sleepiness.
Recently, I read research that shows that autoimmune diseases could run in families. This info came from the Arthritis Foundation. I have also noticed that heavy stress can bring on a flare which I try to avoid. I am no longer working because every time I tried to return I would relapse. After attempting to work 8 times during a 6 mo period, my doc told me that was enough.
Mostly, I get tired of explaining this disease. Not just to the common laymen, but doctors at the ER & such. I can’t blame them, but it does get old after a while. I am thankful for my good days and cherish them… but, most of all, I am praying for a cure.