Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: Pep, 45-54 Male (Patient) Published: July 02

I have been diagnosed with Sarcoidosis since I was 30 years old. It started with a chest cold, then loss of eye sight...joint pain and later developed skin sarcoidosis. The skin sarcoidosis came after I got off of prednisone and I still today get the skin disease. I have been in remission for at least 20 years, however I still get the rashes (don't understand). I am blind in one eye and the major symptom in my diagnoses was my eyes (eye exam did it)!!

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Comment from: Rafia, 25-34 Female (Patient) Published: July 02

i had symptoms like shortness of breath, swollen ankles, anemia, cough, tiredness, fatigue, insomnia, altered heart rate, dizziness, blurred vision, numbness in hands, memory loss, eye infection and loss of apetite. doctor advised me several lab tests including chest x-ray which shows hilar adenopathy. further ct scan showed enlarged lymph nodes. i was told that i might have cancer, tuberculosis or sarcoidosis. then i went through VATs biopsy. it reveals that i have sarcoidosis. then again doctor had my MRI brain, PFT test and many other blood tests. now i m taking corticosteroid and dont know for how long. Furthermore my Vitamin D level is too low. Here in Pakistan nobody knows about sarcoidosis so i feel like an alien when anybody ask about my illness.

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Comment from: Marge, 45-54 Female (Patient) Published: June 13

I had a bad cough which turned out to be bronchitis in Feb. 2013. I was put on Zithromyicin Z-pack and suddenly lost my taste and smell. I used to take three medications for my allergies on a daily basis, but now my mouth,nose, and eyes are so dry I do not need them. I went to an ENT doctor and had a Ct. scan of the brain,MRI of the brain and all turned out negative. Then I decided to see a neurosurgeon who diagnosed me with neuro-saroidosis after getting blood work done. He sent me to a Pulmonologist and I had a chest x-ray with a breathing test done and all negative again. I am so tired of not finding out where this sarcoidosis is located in my body. Now I am told I will need a spinal tap done. My eyes are sensitive to light,and I also had an eye exam done recently but no sarcoidosis again.I do have trouble sleeping,night sweats,feeling tired, depressed, still no taste or smell, trouble concentrating ,dizziness, joint pain, eye problems, etc.I wish there was an answer for me because it has been 4 months now and I am still going to the doctor.

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Comment from: RosiePosie, 65-74 Female (Patient) Published: May 30

I did not have any symptoms. I had an abnormal chest x-ray. (I have to have one per year because I take Humira, a TNF blocker for rheumatoid arthritis. I then had to have a CT scan, which showed extensive non-calcified hilar adenopathy. A blood test then showed I had sarcoidosis. I have to have a bronchoscopy done as soon as a pulmonologist can see me, and I am so scared of the procedure because I have severe problems with anesthesia. Also, I must use my voice the next day and fear injury to my vocal cords.

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Comment from: DEBRA, 55-64 Female (Patient) Published: April 24

I've had sarcoidosis for about 10 years now and still have a feeling of fatigue. I have been experiencing some symptoms that are troubling. It's like I am having an allergic reaction to things: my lips will swell, sometimes an eye, I have been getting hives, and I have a rash-like eruption on my left foot. Also, the tips of my fingers get hot, swollen and sore. I looked this one up and it is called Raynaud's syndrome or phenomenon. This is very troubling and bothersome. I'm also wondering if this is something else.

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Comment from: kwolfe, 55-64 Female (Patient) Published: April 17

I was diagnosed with sarcoidosis last August when I was hospitalized with atrial fibrillation. I had received a double fracture to my leg and ankle and then a brown recluse spider bite on my non-fractured leg. The spider bite caused severe edema of my foot and leg and my fractured leg also developed edema. A chest CT scan showed five swollen lymph nodes and blood work showed a high level of antigens. Fluid pills did not work. I had lots of IV antibiotics and those were slow to work. I developed a rash all over my body. I finally used essential oils on my leg, and after five days the swelling began to subside. I had been having sarcoid symptoms for about 10 years before the diagnosis. I had pneumonia three times in one year and strep five times. I also had numerous sinus infections and severe leg cramps and bone pain. After three months of steroid treatments, I began to improve. Then I started experiencing severe weakness in my legs and arms and had to stop the steroids. I was put on nonsteroidal anti-inflammatory meds and kept having numbness in my arms, along with dizziness. I stopped those meds and now have continuous pain in my legs and back. I also get lots of headaches and have visual disturbances. I feel tired and sickly on a daily basis. I have difficulty concentrating and memory loss, depression, and general malaise.

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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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