Sarcoidosis - Describe Your Experience

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What is sarcoidosis?

Sarcoidosis is a disease that results from a specific type of inflammation of tissues of the body. It can appear in almost any body organ, but it starts most often in the lungs or lymph nodes.

The cause of sarcoidosis is unknown. The disease can appear suddenly and disappear. Or it can develop gradually and go on to produce symptoms that come and go, sometimes for a lifetime.

As sarcoidosis progresses, microscopic lumps of a specific form of inflammation, called granulomas, appear in the affected tissues. In the majority of cases, these granulomas clear up, either with or without treatment. In the few cases where the granulomas do not heal and disappear, the tissues tend to remain inflamed and become scarred (fibrotic).

Sarcoidosis was first identified over 100 years ago by two dermatologists working independently, Dr. Jonathan Hutchinson in England and Dr. Caesar Boeck in Norway. Sarcoidosis was originally called Hutchinson's disease or Boeck's disease. Dr. Boeck went on to fashion today's name for the disease from the Greek words "sark" and "oid," meaning flesh-like. The term describes the skin eruptions that are frequently caused by the illness.

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Comment from: MelanieR, 45-54 Female (Patient) Published: April 08

I am 47 diagnosed with sarcoidosis last fall, but suspected I had it for a few years and finally researched a doctor and made my own appointment at a sarcoidosis clinic. The doctor agreed since I had a liver biopsy with granuloma and I insisted on a biopsy of some of the skin tissue on one of my tattoos that have raised tissue and showed a granuloma. At the time I also had lesions in my fingers and forearms, as well as bone lesions at my wrists. He prescribe Plaquenil since I wanted to stay away from steroids because I am already diabetic. The scar tissue and lumps in my forearms have just about dissipated but my concern now is the amount of fatigue and pain in my legs and hands. I have been to a physiatrist for chronic nerve pain down my arm, he said it wasn't from the neck, and that his EMG indicated some possible carpal tunnel. The pain in my hands is sharp shooting pains at times, other times just aches. My legs ache all the time and if I sit for a period I'm like a 95 year old when I get up; it takes a few steps to get the leg stiffness and motion to get going.

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Comment from: Always hopeful, 65-74 Female (Patient) Published: April 26

At the age of around 12 years I woke up one night with both my shoulders hurting. During those formative years, I was told it was all in my head. At around age 30, I was told I had adult onset asthma. This was granulomas in the lungs. Finally I found a doctor at age 60, who did a routine blood test for the annual physical, and in my next visit, the doctor informed me I had sarcoidosis. More is known now than then, the pain(s), vision issues, mood swings, fatigue, etc., hyperparathyroidism (these glands are supposed to control the amount of calcium going to the bones, but when they malfunction they direct the calcium to the kidneys), and now there are kidney stones, and unbelievable diet restrictions. My wishes to all who suffer for relief.

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