Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

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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Comment from: Hazel, 45-54 Female (Patient) Published: May 06

I have sarcoidosis now ten years. My symptoms are getting worse now. I have bouts of being sick and tired and not fit to get out of bed. My ACE levels have gone from 48 up to 58. My doctor is of no help. I ask for steroids to help me get out of bed. I have had 3 relapses in less than 3 months. It is happening every 3 weeks now.

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Comment from: Louise, 19-24 Female (Patient) Published: May 30

My experience with sarcoidosis has been somewhat up and down. At the start I was really bad I couldn"t breathe right. I had pain in my lungs and was feeling tired all the time. Now I am feeling a bit better, still a little pain at the bottom of my lungs, no breathing problems. I"m just thankful I'm still alive having heard a lot of the stories on this this. I"m 22 and I got diagnosed a year ago.

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Comment from: nana vw, 55-64 Female (Patient) Published: April 08

I am a 63 year old female. In 2007 I had a traumatic back injury and developed pneumonia following the surgery. When I did not recover with antibiotics they did a chest x-ray and discovered the scar tissue. I was followed by several different specialists, but never received any treatment until I was referred to a pulmonary doctor by my family doctor! He began treatment 1 month ago! I have chronic obstructive lung disease, with nodules, my eyes are impacted, I have a CPAP machine for sleeping, and was started on prednisone and methotrexate 3 weeks ago finally! Sad there was no treatment for the sarcoidosis for 7 years!

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Comment from: ms. tricia, 55-64 Female (Patient) Published: March 19

I was diagnosed with sarcoidosis at age 40, I am now 61. This is a chronic disease that periodically goes into remission. My eyes, lungs and skin were affected. The mystery behind this disease is the worst part I have to cope with; not knowing what triggers a flare-up, and I am diabetic from long term use of steroids to treat this disease.

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Comment from: Mags, 55-64 Female (Patient) Published: March 06

I had sharp pains in my legs which is being treated with Lyrica which helps with nerve pain and achiness. My newest symptom of sarcoidosis is dry cracked feet. I do live in Minnesota which doesn"t help.

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Comment from: lynn, 19-24 Female (Patient) Published: March 21

I stared having pain my 10th grade year of high school and I started losing weight like crazy. Within one week I lost 15 pounds. I was 16 at the time, it wasn't till I was 18 when they finally told me what it was. I had shortness of breath (splinting) and stared to sleep all the time and get sick very easily. I was in and out of the hospital my 11th grade year. Finally I found a doctor who know what I had! The other doc. said I had to get surgery to see what it was but thankful I didn't have to but they did say some time down the line I might have to.

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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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