Lori Sadowski’s 22 Year Diagnostic Journey
Nine doctors and a colonoscopy
In fall 1994, the skin on my fingers began to crack and bleed. I tried cream, petroleum jelly, and bandages, but nothing provided relief (I learned it’s called “mechanic’s hands”). In spring of 1995, the cracking cleared up, but the joints in my hands began to swell and my knuckles became huge and painful. The pain was constant, but I was still able to do most things, though I lost dexterity. By summer, the pain had spread to my wrists, ankles, and knees it became difficult to kneel.
I was changing jobs, so I scheduled a checkup, and mentioned the joint pain to my doctor. He said “I hope it isn’t rheumatoid arthritis.” He prescribed naproxen and told me if it helped, I probably didn’t have rheumatoid arthritis (RA).
The naproxen helped enormously. The first day I was able to kneel easily, but the relief only lasted as long as the prescription and by fall 1995, I found it difficult to walk up and down stairs because my knees were so swollen. In spring 1996, I saw a rheumatologist for the first time. He tested me for RA and lupus and ordered x-rays of my hands and knees. The tests came back negative, but he said that 25% of people with these disease test negative and, in his opinion, I had RA. He remarked how little damage my joints showed despite the grotesque appearance of my knuckles. He prescribed a sulfa drug for the RA.
In 2000, I had the flu and went to an urgent care center because I couldn’t shake the cough. The doctor diagnosed me with pneumonia and prescribed antibiotics, but the coughing continued and my hands were still swollen. I saw another doctor, who sent me for chest x-rays, determined I had pneumonia (again), and put me on another round of antibiotics. The doctor also noted the appearance of my knuckles and my fingertips, which he described as “clubbed”. He sent me to a rheumatologist, who ordered tests for RA and lupus — both still negative! But his opinion, too, was that I had RA. He ordered a pulmonary function test, which found a moderate obstructive problem. Since I was still coughing I asked him for a refill of the antibiotic. During this course of antibiotics, which lasted about 4 weeks, my knuckles began to improve. On my return visit to the doctor, I mentioned this. He told me I was “wrong” and prescribed blood pressure meds for “white coat syndrome”, did not give me any diagnosis for the cough, and implied that the obstructive disease was the result of my weight.
By 2004, I was increasingly short of breath and one day, after an especially brisk walk, I thought I was having a heart attack: short of breath with my heart pounding so hard it hurt. I saw a new doctor and he discovered I was severely anemic. I was in my 40s, overweight, and I had read that the anemia was often a sign of uterine fibroids. He told me that all women thought their periods were heavy. He tested my thyroid and ordered a colonoscopy and endoscopy, neither of which found a problem. I continued to ask him about uterine fibroids, and finally he sent me for an ultrasound: the fibroid was enormous.
By this time, my joints had returned to normal but I was still short of breath and coughing. I assumed those symptoms were just from being middle aged, pre-menopausal, overweight, sedentary, and stressed out by work. But I also developed Raynaud’s Syndrome (also called Raynaud’s phenomenon) and always felt cold.
Years passed and I tried yet another doctor. I had grown frustrated by my inability to lose weight and by my fatigue, and I wanted thyroid tests again. But, except for a high red blood count, all my tests were normal. This doctor told me we would pursue the blood issue in the future and recommended I lose weight.
Next: From a cold to heart failure
