Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: Geo, 35-44 Female (Patient) Published: January 24

I just recently found out I have sarcoidosis. I have had a dry cough for 9 years and never could get rid of it. I was always tired and somewhat depressed. Recently I was involved in a car accident and the hospital took X-rays of my lungs. It showed lots of scarring and my lymphnodes were swollen. They did a biopsy of my lungs and diagnosed me with the sarcoidosis disease. I am 44 years old and still in shock because they don't know much about this disease or really how to treat it. I'm looking for a support group to help me get through this.

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Comment from: rasham, 45-54 Female (Patient) Published: October 25

Initially low grade fever and tiredness till the time fever stayed. Investigations done to find the cause of fever, x-ray, ct scan and a bronchoscopy later, sarcoidosis confirmed. Right now taking a course of anti-inflammatory drugs but will avoid steroids at any cost because my doctor says it will sure shot trigger kochs(tb). So living with fever at times and swollen ankles, no other symptoms as such.

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Comment from: Christine, 45-54 Female (Patient) Published: August 10

First symptom was all my joints. This I found was the most painful. Then was my saliva glands. Biopsy detected sarcoidosis. Then in my eyes. This is on off quite a lot. The latest symptom is lumps in cheeks.

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Comment from: flowerquilt, 45-54 Female (Patient) Published: July 07

Dry cough for several months. Then was diagnosed with pneumonia. Finally saw my regular family doctor who ordered chest x-ray.

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Comment from: fran, 65-74 Female (Patient) Published: June 15

Symptoms for a decade were considered to be lupus like, until a granuloma appeared that was diagnosed through biopsy and then further tests. Sarcoidosis diagnosis was made on the basis of enlarged lymphatic nodes around the lungs, very elevated angiotensin levels, inflammatory joint reactions, fatigue and cough. Initially treated with steroids, then stopped due to problems with type two diabetes. Then on to imuran for a year, but developed melanoma, resulting in surgery and bridge graft plus lymph nodes removed and biopsied. I decided I had enough of risky drugs and tried a holistic approach to controlling or reducing inflammation. Went milk free, a challenge, and this seemed to result in more energy for me. I have also been tested and found to have mild pulmonary hypertension which at the present time my doc does not make much of it. I am a tough old gal of 70 and I have a large dog so i exercise daily with a one hour walk and three swims a week. Having said that, I am fed up with the myriad of things that do not feel right all the time. I am interested to know the latest info on Vitamin D25 and 125 related to sarcoidosis.

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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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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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