The doctors are looking to prove a diagnosis of Sarcoidosis which just the sound of it scared me to death. So I have done some looking on the internet and am so glad to have found this forum. Does anyone else, on occasion, suffer from your joints hurting unmercifully bad? My eyes have also been changing and the doctors keep trying to diagnosis me with diabetes because I need new glasses about every 6 months. Anyone else have that? Anyone with breathing that leaves you feeling like you can't get enough air? What about pain that goes up both side of your neck (where your pulses are) and it, at times, seriously interfers with breathing depending on the level of pain? I went to the pulmonologist a couple of weeks ago. I was so intimindated I couldn't ask these questions and I don't have a PCP doctor that I can even get into see she is booked out so far. I had an X-ray that showed that my lymph nodes in my chest are extremely swollen so I am wondering if that is what would interfer with my breathing. There are also 4 "spots" that they are going to biopsy after the cat scan if it shows them....something I can't remember right now. I feel ill all the time but I still put one foot in front of the other to try to get things done but sometimes I just can't do it.
I am still trying to wrap my brain around all of this. I have tried to read the medical stuff about Sarc but don't have a medical dictionary to help me. I really need someone that is willing to talk to me in laymen's terms. I am pretty scared and feel very alone in this. Does this sarcoidosis spread to other parts in your body or just stay where it was found like in the lungs? What are the percentages that it goes into remission? How would I find a family doctor in Springfield, OR that knows about this stuff and how to treat it? Does an autoimmune disease mean that you are going to catch everything that comes along? Do you have to become a hermit or something? Is this stuff terminal? Can they take out the tumors? Do you ever adjust to the fact that you have this stuff? Thanks, Anney
I am providing you with a link on sarcoidosis, where everthing is explained in a layman’s language. The material is written for patients.
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!
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
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 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
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