Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: USVet1993, 45-54 Female (Patient) Published: October 01

I was diagnosed with this dreaded illness sarcoidosis in 2002. But, I was ill for 10 years before that and did not know that I was. I currently experience muscle spasms in my face due to nerve damage, granulomas in my eyelids, chronic fatigue, severe arthritis, headaches, and much more. This disease is crippling but SSA (Social Security Administration) do not recognize this disease. I refuse to let the bad days keep me down. But, it would be nice to get some medical assistance.

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Comment from: DET, 65-74 Male (Patient) Published: September 23

I was just told I had sarcoidosis. After chest x-ray, CT scan, bronchoscope and mediastinoscopy results came back as sarcoidosis. I have fatigue, weight loss, coughing, lung granulomas, and partial hyalinization and calcification. I had PPD skin test. I was given no medicines and told to return in 1 year.

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Comment from: GrandmaDeeDee, 55-64 Female (Patient) Published: August 15

I was recently diagnosed with sarcoidosis after having numerous procedures, scans, ultrasounds. My symptoms started last December; I had sharp pains in the left breast, couldn't get off the floor. I had my significant other take me to the afterhours care. They did CT scans on me, I was there almost all day. Months went by and then my primary doctor said I should have more scans done. I've had 5 procedures done, missed work but now I have some closure on what was going on with me. Now I have an eye infection/inflammation from it. I also have high blood pressure that I'm on medication for, not to mention stomach issues (IBS/GERDS, acid reflux), diverticulosis, migraines, herniated disc, and scoliosis. I'm almost 60. I have a lot going on with me but glad to know I can handle it. I have a wonderful family and doctors who were pro-active in getting this diagnosed.

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Comment from: Ethel, 45-54 Female (Patient) Published: June 12

Since I found out that I have sarcoidosis, my bladder has weakened and I have more pain in my joints. Vitamin D and calcium do not bother me. I do find I am more sensitive to certain chemical smells. I do not get around people that smoke. When I do I cough a lot. Sometimes my breathing gets bad, but I find that if I sleep in a very cool room my breathing is better. I do better in cool rooms, dry climate is good also. I don't take medicines for sarcoidosis which I am glad, but I have a lot of pain and swelling in my joints. I found out I had this disease when I was in my forties. The worst part is the coughing, swelling of hands, feet, legs, and occasional shortness of breath, and still worse is the chronic fatigue and insomnia that I have gotten with this disease. I also take a flu shot every year, and every 5 years the pneumonia shot, this does help. I try not to let this disease get me down. I have my checkups yearly. I am 53 and I watch that I don't get around people that has a bad cold or fever.

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Comment from: mycousinissick, 45-54 Female (Caregiver) Published: May 12

My cousin is barely 40, with 2 young kids, 8 and 4. She can"t remember the last time she felt well. She is fatigued, exhausted all the time, but is the one cousin always having people over, going to parks, outing, taking her kids to the park, all for the sake of living despite her illness. She has inflamed lymph nodes, it"s now affecting her sight and memory, and she thinks it"s getting worse. The doctor is avoiding steroids due to the harsh side effects. She"s afraid to read any more about how horrid this sarcoidosis is, because there doesn"t seem to be any good news. I think she could use a support group. She would like another opinion. Hoping for everyone's healing.

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Comment from: DonnaMRN, 45-54 Female (Patient) Published: May 09

I was first introduced to sarcoidosis when my brother was diagnosed in his early 20s. All that was said at that time is that it wasn"t cancer and not life threatening. My brother is now 59 and he manages his sarcoidosis well. In 2000 I was working as an emergency room (ER) nurse and had a horrible bout of severe joint pain, shortness of breath, erythema nodosum (EN) over my lower legs, and fevers. I was taken to the ER and initially diagnosed with lymphoma. Then a pulmonologist thought it could be sarcoidosis, I had a mediastinoscopy to remove a nodule between my lungs and it was positive for sarcoidosis. Since that time I have been treated with IV steroids, methotrexate, antidepressants, Plaquenil, oral steroids and most recently Remicade for the all over joint pain. At this point I am resolved that this disease has no clear cut answer. I try to live my life as fully as I can but, am limited by the beast called sarcoidosis. To my fellow sufferers, do not retreat. If your current doctor is not helping, seek another until you get some relief.

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Sarcoidosis - Symptoms Question: What symptoms did you 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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