Patient Comments: Sarcoidosis - Describe Your Experience

Please describe your experience with sarcoidosis.

Comment from: pgbbruce, 55-64 Female (Patient) Published: June 12

I have had a dry cough off and on for the past 6 years. Had pnuemonia 3 years ago and diagnosed with it again this past March 2013. I also have chronic pain but do get some relief from taking ibueprofen. It is now June 2013 and I still have double pnuemonia. My doctor referred me to a Pulmonologist. He ordered CT scans and lung sample. I was reading the symptoms and I do have severe shortness of breath, inflammation, and I just realized I have a skin rash that will not go away. Can't wait to get rid of this sarcoidosis. I know that's what it is since I have the symptoms.

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Comment from: sandydee, 45-54 Female (Patient) Published: May 20

I had a dry cough that lasted for six months. I was treated with cough meds. Two months after the cough stopped, I got a rash that took four months to clear up. Then came shortness of breath and fatigue. This week I go in for a biopsy.

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Comment from: gina, 55-64 Female (Patient) Published: April 18

I have just been diagnosed with sarcoidosis. I have had unexplained weakness of my core, back, and legs, especially the left leg. As the result of a muscle biopsy, the findings were sarcoidosis. I am astounded. I don't fit the age range and my symptoms certainly don't have any connection to what I would have expected – no lung problems, no lesions, or no cough. I haven't heard of anyone having any experience with sarcoidosis settling in muscle tissue. I am in the process of getting more evaluations, of both my symptoms and of the diagnosis. Even my neurologist is puzzled – I think he was expecting a diagnosis of one of the muscular dystrophies.

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Comment from: babygirl, 45-54 Female (Patient) Published: April 08

I'm a 46-year-old black female who was diagnosed in 2000 after being in a car accident and having to undergo a series of X-rays. Lymph nodes were found on my lungs and I didn't realize that this was some of the reason why I had been sick in previous years. So much has happened since I've been diagnosed. I have constant pain that nobody understands. I have it in my eyes lungs, and liver. I'm still trying to work, and it is hard explaining why so many symptoms appear. I was just diagnosed with pulmonary hypertension. I have tunnel vision in my left eye and skin irritation. Just last week, I was referred to a urologist. I'm frustrated. Before, I experienced so much dizziness and fainting and didn't know what the problem was. At least now, I have a diagnosis and a concerned doctor.

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Published: August 15

I'm 45 and reside in NYC. I was working in NYC when the towers were struck by a plane. My doctor believes that I was exposed to the dust exposure at 911. I started having a chronic cough and at times felt faint. I went and received a check up and discovered from a lung biopsy that I have sarcoid of the eyes/lungs, and Neuro-Sarcoidosis of the brain. I was immediately placed on prednisone, 80mg intravenously. Thereafter taking the medication I have been diagnosed with seizure disorders and sleep apnea. I'm feeling much better than initially. I'm currently on disability.

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Published: July 08

My daughter has a very bad case of sarcoidosis. It is now in 3 different spots of her brain and also has destroyed over half of her thyroid gland. If it does not slow down she will have to have her thyroid gland removed. And there is a possibility of Kemo for the brain. Does this all make sense? She has been in 24 hours a day severe pain, one of the spots in her brain where she has it is inher pain center.

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Published: July 02

Reading all these comments, I consider myself lucky. While I have had sarcoidosis actively for the last 22 years, my symptoms and disease vary. I do not take medication except for pain when needed as I have "inflammatory" migraines, which I believe are associated with the disease. I've had it all: fatigue; my liver enzymes are up; gall bladder problems; rashes; Bell's palsy; arthritis in my wrist, elbow and ankle; migraines; swelling of my finger; swelling of my parotids, etc. I am 52, and I go to the gym four days a week. I do lift weights and this has kept my bones very strong. My doctor is surprised at my bone density. I have gained weight since my younger days (who hasn't?), but I look OK for my age. I try to eat well, keep active, and keep positive. If I get so fatigued, I take a day off. I do get depressed, but there is more to make me happy. I keep going. Lately my pulse is up, but my blood pressure is OK. My doctor is not worried but will keep an eye on it. I am a white female and not in any of the ethnic groups quoted. Go figure!

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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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