Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: connie1smith, 55-64 Female (Patient) Published: October 25

I began with arthritis, inflammation, fever-like, and flu-like symptoms in 1995. I was told by a rheumatologist I probably had an attachment arthritis disease. I was finally diagnosed with sarcoidosis in 1997. My lymph nodes were swollen and my dermatologist wanted a biopsy. It went dormant for a while but in 2015 it manifested as granulomas on my nose. I am beginning a Plaquenil regiment.

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Comment from: ambrosia211, 45-54 Female (Patient) Published: October 03

I am a 53 year old wife and grandmother that is on crutches full time. I did not have any kind of injury or IV. One night I developed what appeared to be a spider bite looking rash. However, no skin had been broken. It was in the inside of my arm where one might place an IV. My symptoms were bright red rash, hot to the touch, swelling of my entire arm and a rock hard spot under the skin. For 2 days I endured pain, but on day 3, I went to urgent care. A PA (physician's assistant) told me that it looked like cellulitis, and gave me some seriously strong antibiotics. I went home and looked up cellulitis online but what my rash looked like and the pictures I looked at were very different. I kept searching and found my rash online. Not cellulitis, but phlebitis. Now I am on day 5 of antibiotics, and all I feel is a small amount of heat from rash, and a swollen vein. Still painful but at least I can now move my arm and it can be touched. Still unsure what caused it.

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Comment from: Clark Trivett,Phd, 45-54 Female (Patient) Published: September 27

The following worked for me when I had a foreign body in the ear. With your head over the bathroom sink, put ear drops in the ear canal. With warm water in an ear cleaning bulb, spray water in the ear canal as briskly as possible. It may take several bursts of water, but the foreign object will eject into the sink.

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Comment from: tracy, 45-54 Female (Patient) Published: July 26

I have had 12 surgeries in as many years and now have staph infection all over my skin. It started 2 years ago and traveled from my legs all the way up to my arms and back and breasts. I am sick most of the time and get sores in my mouth, nose and private areas. I am allergic to sulfa drugs so many antibiotics have been tried. I am sick of this! My multitude of problems range from cancer to hernias and removal of 7 feet of intestine. I got turned down for disability. I am going to die from this! I moved from Florida to Ohio and my new doctor's answer is to cut my pain medications to about a third and trying to take me off. No hope left for me, my pain is unreal!

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Comment from: MickieD, 45-54 Male (Caregiver) Published: June 07

I received a diagnosis of irritable bowel syndrome (IBS) in my late 30s after finally seeing a gastroenterologist. He did a colonoscopy to rule anything else and diagnosed my pain and diarrhea as IBS. Before exams in graduate school I usually had bad flare ups. My family doctor said it was just how I dealt with being nervous. I used to make a joke about how where other people popped Valium when they were nervous I popped Imodium!

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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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