Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: carol, 55-64 Female (Patient) Published: July 18

i have just been diagnosed with sarcoidosis It took months to know exactly what it was. Symptoms included feeling tired, slow heart rate, pulvertations. Had so many tests. One day went in for broncoscopy because there were shadows on the lungs and swollen lymph glands. They didn't do the test but took me straight into hospital due to my heartrate which was 35bpm. Had a load of tests where they found i had 30% block heart. Had to have pacemaker and defibrillator in one. That was a few days ago ,going back to see the specialist who has informed me i will be put on prednisone i think positive but i worry about what the future holds ,work etc.

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Comment from: Maxi, 55-64 Female (Patient) Published: July 17

I started have symptoms in 2007 I was 52 years old, it started with a dry cough, at first I was told I had TB as I am of an ethnic background (white father, black mother), living & working in China for many years, and my mother died at age 37 when I was only 6 of lung disease which was thought to have been TB, however now the doctors think she may have had Sarcoidosis too. I get dreadful night sweats, and Fatigue I also get ear infection and sinus infection all the time. It is an insidious disease with so little know about it I have decide to take matters into my own hands, I have stop taking the prednisone (with all its side effects), got myself on a vegan diet and excise routine, and although the Sarcoidosis is still spreading slowing through my lungs I have started to feel a lot better in myself. I also starting using a Turboforte Respiratory Device which has improved my lung capacity I have been able to start walking my dog again and enjoy life again for the first time in years

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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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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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