Patient Comments: Sarcoidosis - Symptoms

What symptoms did you experience with sarcoidosis?

Comment from: lucinda, Published: May 23

I was just discharged from the hospital from the diagnosis of rhabdomyolysis. I had extreme diarrhea and was very confused (my doctor called it delusional). I could not get out of the bathtub for hours and sustained a number of injuries trying. When I did get out, the diarrhea was worse and my confusion came and went. I was given massive fluids in the hospital, I had blood in my urine and stool, and was very weak. The confusion resolved, my friends and doctor said I was beginning to look normal. I had had kidney issues when I was born and terrified of dialysis but there was no talk of that. I was given double full IV fluids in 2 IVs for 4 days, monitored for cardiac issues and taken off blood pressure medicines. I follow up with my doctor tomorrow. My thighs hurt like crazy and getting up and down is very hard. On the last two days in the hospital I was started on physical therapy and assessed for a walker, cane, bedside commode, etc. I am drinking water and sugar free power drinks (32 ounce) hourly. I have no appetite and still do not urinate but a couple of times a day.

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Comment from: Mark, 25-34 Male (Caregiver) Published: May 04

I found great luck with the Canker Spanker. It heals cankers so fast and the bonus is it prevents them too!

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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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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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