Alan Johnson

 

For over thirty years I have been extremely blessed in having a very healthy life. Although not fanatical by any means, I have tried to exercise at least 4-5 days a week and eat foods that are somewhat nutritious.

In 1994, I had a serious bout of double pneumonia and was hospitalized for one week. After I recovered I ended up with walking pneumonia approximately 18 months later. After that time, I started getting what I now know are flares. At first I would develop a shaky feeling, followed by a severe sore throat and lymph gland swelling. This in turn was followed by intense fevers and night sweats and inflammation of my joints which would leave me totally incapacitated for days. Prednisone, combined with Augmentin and Vicodin were prescribed for the symptoms. They would generally dissipate after one week and I was able to live a normal life until the next flare, which was usually ever 4-6 months. My primary care physician suspected that I has some sort of autoimmune disorder. Numerous blood tests were taken to determine if I had Lupus, Lyme disease, HIV,Hepatitis, etc., which all came back normal.

What was difficult for my primary care physician to figure out was that I would get different symptoms and varying stages of intensity during each flare. For example, I had one flare with severe neck pain and eye soreness. I was hospitalized for observation and was placed in the care of a neurologist who thought I had meningitis. This was ruled out without a tap through numerous physical examinations.  Again, I had the fevers, swelling and joint pain. During another flare I had night fevers with temperatures so high (105+) that I would become delirious.

One fortunate thing for me was that my primary care physician never questioned my sanity and was honest enough to admit she did not have the answers. I was referred to an infectious disease specialist who examined me and took blood tests to determine if I had some sort of rare disease. It was determined that I did not. I was then sent to a rheumatologist who, after looking at my case history, narrowed my illness down to either lymphoma or Stills, which I had never heard of at the time. A gallium scan was performed which ruled out the lymphoma and I was diagnosed with Stills in July 1999.

At the time of this writing (May 2000) I am having another flare. I am currently on Prednisone and Vicodin. On a good note, this is the first flare I have had since January 1999. What is interesting is that my arthritic symptoms are more severe this time than in the past, although the sore throat, fevers, and headache are less intense. My prayer, which is probably the same for all of us with the disease, is that this will be the last. I have learned, however, to cope with this disease and feel extremely fortunate that I am able to lead a normal life when the flares are not occurring. I know that there are numerous people with Stills that are not so fortunate and I pray for them all.

Approximately six weeks ago (August 2000) I woke up with severe stiffness in my wrists, hands, knees and hips. Just thinking that I probably slept wrong, I thought nothing about it. Although there was a arthritic feeling to it, all of the other symptoms I get when I have a Still's flare were absent.

About a week or so after that I started experiencing quite a bit of fatigue that would leave me almost devoid of energy by the middle part of the day. I would also experience what I call "dead hands" in the afternoon and would have to rest them before they were of any use. I made an appointment to see my GP and put a call in to my rheumy. The GP took blood and ran a CBC, and sed rate test which ended up being normal.   I was then instructed to visit my rhuemy.

After providing her with information regarding my symptoms, she ordered a bone scan and blood test. In addition to a CBC and sed rate test, she also ordered a RF and ANA test. These came back normal. The bone scan, however, revealed inflammation in both wrists. As my rheumy put it "Your wrists were lit up like a Christmas Tree". That, coupled with my other symptoms, led to a  diagnosis of RA and carpel tunnel in both hands.  I have now been placed on prednisone and azulfidine, and I wear splints for my wrists at night. The theory, for the moment anyway, is that my Still's has evolved into RA.

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