Sarcoidosis - Describe Your Experience

Not ready to share? Read other Patient Comments

Please describe your experience with sarcoidosis.

Share your story with others:

MedicineNet appreciates your comment. Your comment may be displayed on the site and will always be published anonymously.Patient Comments FAQs

Enter your Comment

Tell us a bit about your background to make your comments more useful to other MedicineNet users. (Optional)

Screen Name: *

Gender of Patient: Male Female

Age Range of Patient:

I am a: Patient Caregiver

* Screen Name will appear next to the published comment. Please do not include your full name or email address.

By submitting your comment, and other materials (collectively referred to as a "Submission") to MedicineNet, you grant MedicineNet permission to use, copy, transmit, publish, display, edit and modify your Submission in connection with its Web site. MedicineNet will not pay you for your Submission. You represent that you have all rights necessary for MedicineNet to use your Submission as set forth above.

Please keep these guidelines in mind when writing your comment:

  • Please make sure you address the question asked.
  • Due to the overwhelming number of comments received, not all comments will be published.
  • When selecting comments to publish, our staff will choose those that are educational and complement the topic. Please try to stay on topic.
  • Your comment may be edited. We would typically edit comments to make them clearer and more readable. We will remove personal information such as last names, email and web addresses, and other potentially harmful information.
  • We will not notify you if your comment has been published. We suggest that you check back on the topic article regularly.
  • We do not provide medical or healthcare advice, treatment, or diagnosis.

Thank you for participating!

I have read and agree to abide by the MedicineNet Terms and Conditions and the MedicineNet Privacy Policy (required).

To prevent our systems from spam, please complete the following prior to submitting your comment.

Please select the white triangle:

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.

Return to Sarcoidosis

See what others are saying

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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes


Get the latest health and medical information delivered direct to your inbox!

Health Solutions From Our Sponsors