Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: Munno, 55-64 Female (Caregiver) Published: May 10

My wife had swallowing near the chin right side. She was operated and removed the lymph, tested clinically and found Sarcoidosis, Mantoux test was positive, X-ray shows spot on both lungs. Doctor advised Prednisone 20mg daily.

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Comment from: mccoy1130, 55-64 Female (Patient) Published: May 03

I was diagnosed with Sarcoidosis in 1980 when it was still considered a rare disease. My symptoms started with a lump and bruised area on my right ankle (I thought I had hit my ankle on the passenger side car door) but rapidly progressed the point that I was partially bedridden for about six weeks. It took doctors about 9 months to finally diagnose me after waffling between lymphoma and sardoidosis. I was treated with a high dosage of prednisone but when I got pregnant I was taken off (gradually). I have been in remission from sarcoid for about 15 years, but have since developed diabetes and am on a lot of medications for that.

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Comment from: 45-54 Female (Caregiver) Published: March 10

I was diagnosed with sarcoidosis of the lung in 2004. I presented to the ER with chest pain. My CXR showed a nodule in my right lung. Because of my family history my family doctor ordered a CT Scan of the chest as a follow up, this showed not only the nodule in the right lung but also one in the left lung and several lymph nodes were edematous. I had a bronchoscopy, which they were unable to get biopsies from the nodules, but the bronchial washings came back + for MRSA. I was then sent to see a pulmonologist who made the diagnosis. I have been symptom free since and have not required any treatment.

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Comment from: cdbadboysgirl, 35-44 Female (Patient) Published: February 24

I was diagnosed in 2007 after a bout of not being able to breath and feeling very fatigue. I had an x-ray, CAT scan and a PET scan before they did a lung biopsy that found the sarcoidosis. Since then I have still been fatigued and I have been experiencing new things such as hip pain and pain in my muscle alone with pain the lymph area under my right arm. People don't understand when you tell them that you hurt all over I found myself just not sharing with people when I don't feel good and just acting happy and keep myself as busy as I can.

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Comment from: ruth4686, 55-64 Female (Patient) Published: February 24

I have had sarcadosis for 15 years, until 6 months ago it has not been a problem, then I started with my ear lobes itching, then I had what appeared to be poison ivy on my forearm, then several other areas developed, shortly after. I developed eye pain in my right side, that cleared and went to the other eye, finally got the right diagnosis, but know I am having pain and swelling in my knee that I had replaced 5 years ago, either I have damaged the knee or I am concerned I could have sarcoidosis in it.

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Comment from: Pam Logan, 55-64 Female (Patient) Published: February 24

I am a 55 year old black female, I have been rapidly losing weight since December 2010 and it is now February, 2011 and I have lost 25 pounds. I have a problem breathing, heart palpitations, and fatigue. I have had every test you can think of and no one can tell me what is happening to me. Not my medical doctor or lung doctor I don't feel I can make it too much longer like this.

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Comment from: hopeful, 45-54 Female (Patient) Published: February 09

Have recently been diagnosed with sarcoidosis. I have difficulty taking a deep breath, worse when I lay down or climb stairs. Have had difficulty swallowing for about 6 weeks, some reflux. Itching and bumps on my shins. Fatigue...when I wake up after sleeping 10 hours, I could sleep another 10. Blurred vision. Joint pain, especially hips, shoulders, knees, ankles...most recently toes.

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Comment from: Judy, 65-74 Female (Patient) Published: February 07

I was losing weight without trying and also had a skin rash. My doctor sent me to a specialist for testing & the result was sarcoidosis. I was thinking I had cancer so this was a relief.

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Patient Comments

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Sarcoidosis - Describe Your Experience Question: Please describe your experience with sarcoidosis.
Sarcoidosis - Treatment Question: What kinds of treatment, including medication, did you receive for sarcoidosis? Did they help?
Sarcoidosis - Coping Question: How have you been able to cope with your sarcoidosis?

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