Does anyone here right now have Sarcoidosis or know someone who has it?

United States
November 28, 2006 5:40pm CST
I have recently been diagnosed with Sarcoidosis and am trying to find the best research articles to better understand it. I have it in my brain and wonder if it is going to progress while on medication and if I should worry about my long term outcome.
1 person likes this
11 responses
@claudia413 (4283)
• United States
30 Nov 06
Here's some information I found on Sarcoidosis on the web. I hope it helps you.
1 person likes this
@fkhan06 (59)
• India
24 Mar 08
I would suggest you to stop thinking that it will grow as Power of Mind can improve your healing. I am sure you would have read about TERRY FOX. syed
@fkhan06 (59)
• India
8 Mar 08
GOOD NEWS is Sarcoidosis goes off without treatment in some cases. Intensity of the disease and any organ is affected or not is to be assessed by the Doctors ( Infectious Diseases Consultant). Iam sure you will learn more if you can read the pages in
@pendragon (3351)
• United States
14 Aug 07
I have it in my optic nerve,lungs and lymph nodes.I was on prednisone for a while, pill and eye drops.Lots of people have it in North carolina, an odd amount of people, some claim that it is a reaction to pine pollen,some do not ascribe to that theory.I undrestand that treating it can lead to the condition going dormant for long periods of time.Again, it all depends on the severity of your condition and how long you've been treated.there is loads of info out there though,it is a rather trying condition, i wish you the best.
• United States
8 Jul 07
I've got sarcoid. Diagnosed in 2004. Still learning about it. I'm in a support group for sarcoid and the people there are great for answers. They've helped me more than once. carol ô¿ô
• United States
28 Jun 07
I, myself do not have sarcoidosis. However, my husband (44) has been having a whole host of medical problems for the past sixish months. At one point he was having some severe abdominal pains and when the doctor did the abdominal CT scan, they caught a portion of his lungs in it. His lymph nodes are enlarged, so he needs to go back for another CT scan, and then possibly a biopsy if they haven't shrunk. If he does have it, apparently it would explain a ton of the symptoms he has been having. Including repeat admissions to the hospital with chest pains.
@14missy (3185)
• Australia
23 May 07
I don't know a lot about sarcoidosis of the brain but I have it in the lungs. I was diagnosed about 7 years ago and apart from having lower lung function, I take large doses of steroids when it starts to play up to get me back on track. I know it is auto immune thing, so stress is a big trigger. Even as a nurse I didn't know much about it when I was diagnosed and had to look up heaps of medical books and internet sites to get any real info. This year I even found that calcium does not uptake in your body with sarcoid and I can't take it orally as it affects the sarcoid, so i am starting to have troubles with osteoporosis and I am only 41. Good luck. I am here for a chat at times if you would like any moral support as there doesn't seem to be a lot of people around with this disease and it affects so many different organs of the body that thew sysmptoms are really broad...
@alilswt (388)
• United States
10 May 07
I was diagnosed about 3 years ago with it in my lungs the best i think you can do is first to know you are not alone and that sarcoid does not have you you have it be strong and do different searches online that is what i do doctors do not know it all so it helps in a great was to be as informed as possible yourself personally i go on faith as well there are more people than you may realize that have this take care and keep your head up :) ~Laura
@marenda (41)
• United States
28 Apr 07
although its rare I'm starting to hear of many more cases. I was diagnosed with it back in 1997. I have taken all sorts of medications and to be frank the medicines all made me feel worse and while they alleviated some symptoms they mainly added a laundry list of additional symptoms and problems. Every treatment seems to be experimental because none of the doctors really know the cause origin or anything else for that matter:( Not sure what your personal beliefs are but I can honestly tell you that the best medicine for me has been prayer, rest, relaxtion, and refusing to allow Sarcoidosis to take over my life. (that has been challenging to say the least) But like with everything else you'll have good days and bad days. Stay strong and stay positive. (watch The Secret) If you ever want to talk, vent, ask questions etc... I'm here. To your health and wellness. Best wishes, Marenda
@Dundazz (14)
• Norway
1 Feb 07
Hi Pillowgirl. I,v been diagnosed with sarcoidosis 3 years ago. I have it in my body, on my skin, lymph, in my joints and so on. Here are some links: And i want to tell you that im living a good life, full time job:)
@helpout (210)
• Ireland
20 Jan 07
i have sarcoidosis in my lungs,apparently its affecting my lymph nodes,i have to take two steroid inhalers for ever basically,can you let me know how you are coping??