I am a 27 year old wife and mother who was diagnosed with Adult Onset Stills Disease October 21, 1998. I am one of the very few who can say that they were diagnosed within six months of the onset of symptoms. In fact, I was actually diagnosed within four months of becoming dreadfully ill in June 1998.
I distinctly remember feeling as if I was coming down with a sinus infection or something, I was running a low grade temp. After a couple of days of having this fever of 101, I began having pain in my wrists and felt as if I had a stiff neck from sleeping crooked or something. The pain in my hands started to become alarming and I just felt lousy, so I went to my family D.O. who gave me some antibiotics and some NSAIDs and sent me home. I kept getting worse and worse until, on July 17, my husband literally carried me into the side door of his office. I was burning up with fever and had a rash all over my arms and legs. I remember shivering so hard that a nurse was holding me down onto the table. So they decided to take a look at the results of my blood tests from a week before and see that I had an extremely low white count and platelet count. My rheumatoid factor was negative, and so was my ANA.
My Dr. hospitalized me in the local, extremely small hospital. Over the next several days, I faded in and out of reality as my fever spiked daily to 105. My days and nights were a frightening ritual of changing the ice packs that cooled my rash-covered body. Somewhere along the timeline, my Dr. decided in his head that I had Lymes disease. Never mind that I had tested negative for Lymes, Never mind that I had only one tick bite over a month earlier. He was dead set on me having a tick-born disease and ran bag after bag of high-powered antibiotics through my IV. I had ultra sounds, ct scans, even a bone marrow aspiration, and they could not explain why I was so sick.
After a week in the hospital, my husband and I decided we could just as well change those ice packs at home, because all they were doing was giving me Tylenol and antibiotics. We were also extremely disturbed when they started talk of removing my spleen in the hopes that it would “straighten out” my immune systems. So we left. At home, I was still bed ridden, but in much better spirits. We contacted an infectious disease Dr. about 50 miles from our home and made an appointment for nearly 2 weeks later. The timeline now is about mid August, and I have already been scared with hypothetical dx’s like “Could be a rare form of Lymphoma”, and “I really think this looks like Lupus”. So you can imagine my surprise when this “brilliant” doctor I have been lucky enough to get an appointment with spends 25 minutes hearing my story and doing a physical exam before he tells me his gut feeling is that I have mono. MONO! What a relief! We were so happy that it wasn’t cancer or ms or something that we were overjoyed and then horribly mad at my previous Dr. for missing something as basic as mono. My infectious disease Dr. also tested for tularemia, ayrelekia, and rocky mountain spotted tick fever, but the results were positive for mono. He said that my rash was probably a reaction to being over-medicated on all of those unnecessary antibiotics my previous Dr. had been pumping into me.
So we went home that day convinced that my pain was going to end and life would be normal again in just a few weeks. Boy were we wrong.... Over the next few weeks, my fevers improved, but I still had pain in my hands and felt very unsteady walking. It was as if my knees were “floating” around and I could fall over at any minute. I was frustrated because I went back to the Dr. and I was very scared. I knew in my heart something was really wrong and he wouldn’t listen. The rash always disappeared by morning so he never saw it. He shrugged his shoulders about the pain and sent me to a rheumatologist at the same clinic. The rheumy looked at me, did some x-rays and basically dismissed everything as part of a bad case of mono. He made me feel so bad that I just went home knowing that no one could help me. I saw my infectious disease Dr. one more time, telling him...no warning him...that I was becoming very, very ill and would be as sick as I had been in July. I knew it was coming on and I was getting worse and worse.
Just 5 days later, now mid October, I was at work (with a 103 fever) when my boss noticed my right hand was covered in a rash and swelling at an alarming rate. In about 10 minutes, my entire arm was covered and the rash was moving up my neck and onto my face. My hand was three times its normal size. My husband came to work to get me (I couldn’t drive myself at this point) and the decision was made to go the 50 miles to my infectious disease Dr.’s hospital. I was seen in the ER by another Dr. who ran a series of blood tests showing low WBC, elevated (36) SED rate, low platelet, anemic, and the most surprising was that I was NEGATIVE for Mono. I had already told him that I was positive and that I had just seen my Dr. This Dr. was very disturbed to hear that I had been this sick for 4 months. He called my Dr.’s superior and I was admitted to the hospital with a private room, three MD’s working round the clock to make a diagnosis, and a most humble apology from the Dr. that had been blowing me off for months. After a huge battery of tests (the girl from the lab had never seen so many) and a biopsy of my rash and one of the swollen lymph nodes in my neck, the same rheumy triumphantly staked his claim as having found a rare auto-immune and connective tissue disease called Stills.
I think he is intrigued because it is rare to find perfectly healthy people struck down like this, and he puts his energy into helping me get my life back. To have started off so rocky, we have established a good relationship now. As soon as I was diagnosed, I was transferred from my infectious disease Dr.’s care to my rheumy who began treatment that day. Treatment started with 60 mg Prednisone per day, and is now at 30 mg. I have been as low as 7..5 mg, but a recent flare has me on the rise. I am also on Methotrexate injections and have recently started Enbrel. I take Flexoril, Darvocet, Hydrocodone, Imitrex injections, Prevacid and many other drugs to offset either symptoms or side effects of something else. At this point, I’m a walking pharmacy...but at least I’m a WALKING pharmacy, right?
Shelly's email firstname.lastname@example.org
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