My husband is reserved and private and I am the opposite which is the reason I am sharing his story. He is a success story. When he was diagnosed with Wegener’s 16 years ago, he had just turned 40 and attributed some of his early symptoms as getting older and excessive yard work. He had symmetrical joint pain in arms, legs, shooting pain in his legs, blotchy spots, numbness, hoarse throat, foot drop, weight loss, night sweats, general malaise and blood work numbers that were alarming. Our friend who was a doctor, told us to go to a rheumatologist. We were fortunate that my husband quickly received a battery of tests and was seen by specialty doctors in a very short period of time ruling out what it was not and narrowing down what his illness might be. He was hospitalized, had lung surgery for a biopsy that confirmed the disease and subsequently was on high dose prednisone with a taper to Methotrexate and then was weaned off the Methotrexate and has been medication-free for 13+ years! He was and still remains active with many outdoor activities.
He has some residual foot numbness and chronic sinusitis and we watch for signs but we are living and enjoying life. Sixteen years ago, there was little information, no support group and the Internet was in its early stages so information was outdated and we felt alone. Back then, the best advice his doctor had said was not to read anything as most indicated a poor diagnosis. Today we are fortunate to be able to gather information and knowledge is definitely power. He is living proof that early diagnosis is key and is a Wegener’s success story.
Name withheld for privacy
Published: May 2012
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