Thank you so much for the encouragement!!! When the doctor said that it was like cancer but not it really scared me. How can something be "like cancer" and not be deadly? I am thinking that he really needs to change his description of the condition and perhaps compare it to something else or to not compare it to anything. doctornee sent me some links to go and look at to get some information in laymen's terms that I can understand and that was extremely helpful also. I don't feel like I have to get my life in order because I am going to drop dead at anytime. It is just an absolute blessing that I found this forum with people that are willing to share positive info. Thank you again for writing. Anney
My friend, age 49, has sarcoidosis, also with vision problems, also with enlarged lymph nodes and breathing problems. Hers went into remission evne without taking steroids. Had no trouble for about a year and has had a mild flareup. It has not altered her life or career. I don't know if most cases are like hers or she's a lucky one. I also had a coworker who has had it for over 20 years. I wouldn't have known if she hadn't told us she was getting some scans done to make sure her sarcoidosis wasn't active again. I know it's hard to not worry. Just want you to know that not everyone ends up with the worst case scenario.
Thank you so much for the information. It is alot to take in but at least gives me information I can understand. I was completely shocked to see that Sarc is found in people that don't smoke, which I do. I have worried all these years about getting cancer or disease connected with smoking and wouldn't you know....I get one that doesn't have anything to do with it. How's that or irony? I am still quitting smoking though just in case. Thanks again. Anney
Hi
Thanks for writing to the forum!
I am providing you with a link on sarcoidosis, where everthing is explained in a layman’s language. The material is written for patients.
http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html
You do not have to live like a hermit. However there are certain precautions you need to take life long, which are mentioned in this link.
Yes, the tumors can be removed and biopsied to know the cause. With proper treatment, sarcoidosis can go into remission. Please read through this link for all the details: http://noairtogo.tripod.com/sarcoid.htm
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!