Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

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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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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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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