Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: redrose, 75 or over Female (Patient) Published: June 02

I was diagnosed with lung cancer of my right lung in 2009. I had lung cancer in my left lung in 2006. So every year they perform a PET scan to check my left lung. The results of the PET scan showed I had cancer in my right lung. However, there was no biopsy done. I had surgery on May 3, 2010. The doctor told me it was benign and it was a bacteria (which later I found out was granuloma). I couldn't understand why there was no biopsy done. Later, when I talked to the surgeon I asked "if you had known before the surgery, it was a bacteria, couldn't it have been treated with antibiotics?" He said "yes". I really was upset as I went through hell with that surgery and it took me almost a year to gain my strength and I lost 8 lbs and still weigh only 110.

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Comment from: Washred, 25-34 Male (Patient) Published: May 27

The first symptom I discovered before being diagnosed with sarcoidosis was that I woke up with blurred vision in my left eye and by the end of the day it turned red.

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Comment from: Aliceanne, 55-64 Female (Patient) Published: May 24

I was diagnosis in 1950 at the age of 4 years old. My mother had survived TB, by having radical surgery, a lung removed. The doctors back then thought the TB may have brought on the Sarcoidosis. Also, Streptococci was considered. I had nodules on my lower legs. Again, in 1972 I was diagnosis with Sarcoidosis and admitted to the University Hospital of San Diego. I had wisdom teeth pulled while unknowingly had strep throat. Bed rest was prescribed. I have been in remission ever since, living a normal healthy life. My current doctor believes that Sarcoidosis is basically a youthful disease.

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Comment from: Wendy, 45-54 Female (Patient) Published: May 16

I was diagnosed with Sarc of the lung in January this year. I had extreme fatigue, shortness of breath and a LOT of swelling and pain of both knees and both ankles. It was sudden and very bewildering. I also had pain over my chest and in my back; doc sent me to have X-rays done and then the hospital admitted me, thinking I had a blood clot. After a bronchoscopy they discovered the Sarcoid. I'm on Prednisone which works well except for the loss and growth of hair in the wrong places. I am a 47 year old white woman and have always had good health except for sinus and hayfever and had to work in a VERY smoky office for many years back in the 1980's. I still get very tired at times, probably because they Prednisone has been reduced substantially.

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Comment from: pat, 45-54 Female (Patient) Published: May 13

I am a 54 year old woman. I do not smoke, drink and am in reasonably good health. No meds whatsoever. Over the past month I have had a persistent cough with bouts of vertigo. I went to the doctor and they put me on a 5 day antibiotic. I am on the 4th day. Vertigo has subsided but cough is still here. Not quite as often but enough.

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Comment from: cougher, 55-64 Male (Patient) Published: May 10

I am a 58 year old white male. I have been in great health my whole life. I never smoked, I exercise regularly and eat healthy. About three months ago I started coughing .I thought I was catching a cold and didn't pay much attention to it until it didn't go away. Then it developed into a chronic cough that just kept getting worse and worse. After a trip to my regular physician he sent me to a pulmonary physician. After x-rays, ekg's, chest scans, a bronchoscopy, blood tests, my Doctor said I had sarcoidosis. I was put on prednisone which seemed to help, but when I stopped, the coughing resumed. I am still going through the treatment phase but every day brings to wonder what is going to happen next.

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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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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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