Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: JennyB, 45-54 Female (Patient) Published: September 08

I received a clinical diagnosis of sarcoidosis the same day I was told I had breast cancer. During chemotherapy problems with white blood cell count and infections every round were probably due to sarcoidosis. Now one year later I have developed a dry cough and shortness of breath, and also very painful upper back spasms. I already have fatigue. I don't cough at all when I am sleeping or not talking in a warm room.

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Comment from: Shaydie, 35-44 Female (Patient) Published: July 07

I kept getting shooting, stabbing pains in my rib cage for months. A couple of times I almost wrecked my car, they hit me so hard, but usually I would be at my desk and I'd grip something and scream. They were very fleeting. I went to two emergency rooms and an urgent care and kept being told I had pleurisy. I knew it was something else. Finally, a pulmonologist by chance happened to walk by my x-ray and saw a nodule no one else had seen. I went in for video-assisted thoracoscopic surgery (VATS) and was diagnosed with sarcoidosis. I used to get out of breath from riding my bike or running up the stairs, but thought I must have been out of shape. My oxygen levels are always perfect, even though the scarring has destroyed about 30% of my lungs. After two years on prednisone, I went off and still get the shooting, stabbing pains on occasion, but not as bad as I did. In the meanwhile, I was also diagnosed with Sjogren's syndrome (another autoimmune disease) which causes me to have dry eyes and sore joints. I take Plaquenil for that.

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Comment from: KMoore, 45-54 Female (Patient) Published: January 09

I have been to every kind of doctor there is. At first they thought I had lupus. Then recently I had an MRI of my brain and they found lesions. They thought it was multiple sclerosis. But both of those were ruled out. I just went to a rheumatologist because I have pain in almost all of my joints. I thought I had arthritis. But that was ruled out. But the doctor said that my ACE levels are high. But my chest x-rays were normal. He thinks that I may have sarcoidosis in my nervous system and wants me to have a biopsy of my nerves. I have night sweats, severe pain in my joints, numbness and tingling in my hands and legs and shortness of breath. I get bronchitis, sinusitis and pneumonia a lot, among other symptoms. But I am wondering if the lesions in my brain can be caused from Sarcoidosis.

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Comment from: Glenn, 55-64 Male (Patient) Published: December 17

It was in 1992 when I first had the symptoms of sarcoidosis uveitis. I had a skin biopsy and the results came back as positive for sarcoidosis. I went for various tests to see if the disease was affecting elsewhere but it proved that it was only my eyes. I still have problems to this day with my eyes flaring up where I cannot face artificial light or sunlight for a few hours. I am on a high dose of steroids at the moment as I recently had a flare up which stopped me from seeing out of my right eye for a period of two to three weeks. I am also on Maxidex steroid eye drops to keep the inflammation under control. I am a fit 50 year old who goes to the gym every day. As I said the only issue I have is my eyes.

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Comment from: Anita, 45-54 Female (Patient) Published: October 08

I was diagnosed for sarcoidosis some years back and I took some steroids. Of late I am unable to swallow food, feel breathless all the time, and fall prey to infections. I am unable to sit in air-conditioned place as it causes me cough and weakness.

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Comment from: jennifertp3, 35-44 Female (Patient) Published: July 30

I began having raised area to my skin on my legs. My doctor didn't notice anything. I then began to lose weight due to being unable to swallow my food. I lost 80 lbs in less than 3 months. I was sluggish and tired all the time, couldn't concentrate, and slept all the time. I have not been able to work due to weakness and numbness all over. Again the doctor said I was depressed and I had a sinus infection. It was when I went to get my annual eye exam that my eye doctor noticed a difference in my eyes. When my eye sight became blurred, I went back and my optic nerves were swollen so much so that my eyes were bleeding. I had an MRI and the next day woke up with facial paralysis to my left side of my face. Less than 6 weeks later, I had a spinal tap done and the next day woke up and the right side of my face was paralyzed. I was just diagnosed with Sarcoidosis this weekend. I was going blind also. I am scared because I don't know what is going to happen next.

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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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