Please describe your experience with sarcoidosis. Submit Your Comment

Comment from: Tonya, 45-54 Female (Patient) Published: September 11

In June 2016, I was hospitalized for 12 days after experiencing an excessive cough, extreme fatigue and difficulty breathing. After many tests were performed, the diagnosis was sarcoidosis. In addition to the sarcoidosis diagnosis, I was also diagnosed with Bell's palsy and uveitis (all sarcoidosis related). I was placed on prednisone for almost two years. The medication did treat my condition, however, caused many negative side effects and health related issues.

Published: September 10

I am a 51 yr old black woman and I have sarcoidosis. I was misdiagnosed initially for 3 yrs. (1981 - 1984) my case was severe. At 24 yrs old I had sarcoid in my bones (from head to toe), my skin, and nasal passages. I was treated with prednisone for 20 years. At 24 yrs old, my joints were brittle and had holes. Granulomas formed on my face and I have had 3 surgeries on my tear ducts (both eyes). I happy to say my bones have rejuvenated, (medically impossible), I have flawless skin, and I can breathe thru my nose. I have been off prednisone to for 3 yrs. I’m now a beauty consultant and I feel good!

Published: September 10

My major symptoms are night sweats, shortness of breath when I reach a certain weight and when I am sleep deprived. I was diagnosed in my twenties and I find the struggle or the symptoms more accented now that I'm fifty and the weight is more of a struggle along with the added heat to the night sweats.

Comment from: lilsblessed2, 55-64 Female (Patient) Published: April 23

My experience with sarcoidosis included getting lip and lung biopsies to detect what part of my body was infected. After I was diagnosed, I was off work for a month because I was tired all the time and could not function normally. Now when I have shortness of breath I inhale albuterol which helps me to breathe.

Comment from: kelly, 45-54 Female (Patient) Published: February 15

When I was thirty eight I went to a new doctor for extremely high blood pressure and he did a chest X-ray, then called me into his private office and I knew I was in trouble. He had found ten nodules in my lungs and I was a smoker so... After a CT scan and a closed lung biopsy I was diagnosed with lung cancer. I was devastated. I was a single mother of three and had no idea what to do. My new doctor immediately got me in to see an oncologist and after reviewing everything he decided that something just didn't add up and decided to do an open lung biopsy. I had the biopsy done on April 1st and my doctor actually wrote in my chart “April Fool’s NO Cancer!” It was sarcoidosis! I had lost 50lbs, had developed a cough and was barely able to function at my job. I had all the symptoms of cancer BUT also of sarcoidosis. It has spread to my eyes, brain and heart but I am relatively symptom free aside from migraines but it sure beats dying from cancer! I can handle the prednisone when I have to take it. It's a small price to pay.

Comment from: Hopeful, 55-64 Female (Patient) Published: August 16

I am a 62 year old female and have recently diagnosed with sarcoidosis. It revealed itself with headaches fever and shortness of breath and also poor blood count. I really don't know what to expect. I am looking for nutritional support (what natural foods or supplements might help in fighting the condition)

Comment from: InCT, 35-44 Male (Patient) Published: January 27

I'm a 44 year-old Hispanic male. This article was much more detailed than others I've read since my diagnosis in 1999. For the first six months I had dyspnea and couldn't go to sleep. The doctors misdiagnosed as panic attacks and I felt like they really didn't believe I was having problems, but later x-rays revealing a granuloma on my head confirmed that I was sick. However, after six months everything seemed to disappear and I haven't had any symptoms since. I quit smoking and drink on occasion, and only recently have I begun to have the same shortness of breath and chronic cough that I had back in 1999.

Comment from: ed, 55-64 Male (Patient) Published: October 23

I am a 55 year old man I was misdiagnosed for two years it's like riding a BAD rollercoaster my hands and legs are numb most of the time. After about an hour of getting out of bed, my feet swell and my legs hurt until I can get them up (usually on the couch watching TV) but they start to feel better after a few minutes. I am on drugs for the nerve pain since mine is affecting my spinal cord. I don't wish this on anyone.

Comment from: rbracketts, 55-64 Male (Patient) Published: October 06

I am a 63 year-old male who came down with Sarciodosis while in the Navy. I was diagnosed in December of 1968. I had lung and joint involvement. I spent the last 9 months of my active duty in the Long Beach Naval Hospital. I was given a medical discharge and sent home in Sept of '69. Since then I have been on a rollercoaster ride. I got about 80% of lung capacity back in early 82-83. My worst problems have been severe joint arthropathy, and skin sarc. I have been very blessed to only have had these I know so many others have had much more involvement. Each day can bring new challenges, but you have to take it one day at a time...and that's how I have managed it over these many years.


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