"Sarcoidosis" a silent killer
Hello. My name is Marilyn and I have sarcoidosis. Sarcoidosis is an inflammatory disease that affects any bodily organ. Specifically it almost always starts in the lungs. February of 07 I went in for a 6-week check-up following knee surgery. My doctor advised me that he wanted to do a ct scan because I was only 30 at the time and has had 4 surgeries to have tumors removed. Too young to be experiencing the problems that I was experiencing. Anyway I goes to get the ct done. Two hrs. later I gets to my surgical doctor for my check-up. He gets my test results back and what do you know, I have sarcoidosis. I have never heard of this disease. So he refers me to a pulmonary disease specialist asap. Two days later I'm getting all sorts of chest x-rays done, breathing tests, blood tests, etc...
There is no cure for this potentially fatal disease only treatments and hope. My disease has spreaded to other parts of my body. Noone has informed me of this disease, so I am doing everything in my power to help inform as many people as I can. There are only 2 tests that can detect sarcoidosis. A chest x-ray and ct scan. Please get tested! This is a serious disease which only gets worse without treatment. The disease has been known to burn itself out and go away with little to no treatment. But for a serious case like mine and Mr. Mac, a life-time of treatment will be critical to living.
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I am sorry that you have this terrible disease. I was first diagnosed in 1998. I had severe chest pain with it. I took prednisone for nine months and I thought it was gone. But after eight years, it came back with a vengence. I am now on oxygen, when I go out to stores, or just walking. I had three more episodes of having to take prednisone to get it back into submission. I am always at risk for more damage to my body, but there is not a lot you can do with it. My body's organs have to be monitored for sarcoidosis. We are looking for it to travel to other places in my body. So everytime I get sick again I have to deal with mri's, and other tests to see if my body parts are still working. I have two leaking heart valves that I didn't have two years ago. So be sure you get with some good doctors to help you survive what you have. I live from day to day. I have trouble everyday, but I try to keep the depression away from my door. Its not easy, but you can do it. There is a lot of us who have sarcoidosis out here. We live everyday. Good luck to you.
Thank you so much for those words of encouragement. That really means a lot to me. It's good to hear from someone who knows what I'm going through. And may GOD bless you as well.
Thank you for sharing your story. I've never heard of this disease, either.
For those of you interested, you may visit EmpowHer's Sarcoidosis page for more information.
I have a sarcoidosis too. It has affected my vision a lot in these years. The vision on one eye is now only 20% and on the other 90%. I just hope... I was diagnosed a few weeks ago, but uveitis started 12 years ago. Sacroidosis caused uveitis and vision loss.