Looking for info on Sarcoidosis

@leenie50 (3992)
United States
July 17, 2010 6:35pm CST
I have a new illness called Sarcoidosis. Not only is it a complicated name but also a complicated disease. I have of course gone online and printed out information from various sites. But what I am hoping to to get is help from either people who have it or had it or from those who know someone who has or had it. It can affect people in different ways. It compromises the immune system. It inflames various organs. The main ones are the lungs, liver, heart and others. Mine is affecting my lungs and liver. I have 2 enlarged lymph nodes in my chest which make it difficult to breath at times. When it is flared up, it feels like someone is pressing on my abdomen making it hard to breathe. I get pains in my chest that come and go and other symptoms. Now I would like to hear about others experience with this disease. Does anyone have any information to share? Hugsss to all, Leenie
2 people like this
7 responses
@Thoroughrob (11750)
• United States
19 Jul 10
I hope you get the answers you would like. This is the first time that I had heard of it, and had to check out the discussion to find out what it is. I hope things get better for you.
2 people like this
@leenie50 (3992)
• United States
19 Jul 10
Thank you Rob for the response you gave to the jerk above you. And thank you for responding. I did get some good info. Thanks for the well wishes. Leenie
@Thoroughrob (11750)
• United States
19 Jul 10
Also report the jerk. They are posting the same comment to many discussions. I reported already.
@leenie50 (3992)
• United States
19 Jul 10
Thank you again Rob. I did report the jerk. Instead of responding to him I went to his profile and read what he was doing. Hopefully he will be gone soon. You are a good friend. Leenie
@mentalward (14695)
• United States
18 Jul 10
Hi Leenie. I didn't know anything about this disease but found some great information on the Mayo Clinic's website. Have you looked there? Here's the link to the Mayo Clinic: http://www.mayoclinic.com/health/sarcoidosis/DS00251/ They state that most cases of sarcoidosis go away on their own within two years. So, there is some hope! However, you do need to be monitored and treated for each symptom to reduce the risk of permanent damage. The better your symptoms are treated, the less the risk of permanant damage. So, do what your doctor says! That's Dr. Marti's advice. Big hugs to you, Leenie! Marti
@leenie50 (3992)
• United States
18 Jul 10
Hi Marti, Thanks for the research you did. Yes I have been to the Mayo Clinic site. I have been to lots of sites. There are so many pieces to this disease that I learn more with each page I read. Of course every symptom isn't suffered by all who have the disease. Don't worry about me, my doctors take good care of me. They just aren't as forthcoming as I'd like them to be. xoxoxo Leenie
@quita88 (3716)
• United States
19 Jul 10
I am truly sorry to hear about this Sarcoidosis...........never heard of it. It's my guess you have found the most updated info on the web tho. I'll put you in my prayers and God be with you always, quita
@leenie50 (3992)
• United States
22 Jul 10
Hi Quittq, I have received a lot of good information. I got some on a personal level which is what I was really looking for. Those that have personal experience either themselves or someone they know is really the kind of knowledge that puts an illness in perspective. Thanks for responding. Leenie
@quita88 (3716)
• United States
22 Jul 10
I am happy you have received the info you wanted. Do take care. quita
• United States
23 Jul 10
Hi, Leenie! I know nothing about this, but I want you to know you're in my prayers, as you have been for so long. Now, more than ever. I pray you will be well and happy and enjoying a better life than you've had, dear friend! Much, much love, Joanne
1 person likes this
@leenie50 (3992)
• United States
30 Jul 10
Hi Jo, Sorry it took me so long to get back to you but last week was not a good one for me but I'm doing better the last couple of days. You have been such a good friend. It seems I'm not happy unless I pack on another illness. I guess someone has to do it. Most people have never heard of sarcoidosis but the ones that responded gave me some good info. Thanks for responding. I'll email you soon. Love Ya Leenie
@bhanusb (5709)
• India
19 Jul 10
Hi leenie, I'm very sad for your sufferings. I have no idea about the disease. In dictionary it says tumor in various parts of the body. It may not be so. Doctors are the right person who can help you. Immediately consult your doctor.I pray let you be free from pains and sufferings.
1 person likes this
@leenie50 (3992)
• United States
19 Jul 10
Thank you Bhanusb for your kind words. You are a good friend. My Doctors are taking care of me but the disease is complicated. I've read many many articles from many sites and know about the symptoms. I just wanted to see how common it is and how people have been affected by it. I have received some good information from everyone except from #7 who is obviously a troll. These people have no heart. Take care dear friend, Leenie
@gabs8513 (48715)
• United Kingdom
18 Jul 10
Hi Sweet I have never heard of this but I really hope they can keep it under control for you I mean how on earth did it happen that you got this Sweetie, I hope that you will get some Information about it here but please take good care Love you
1 person likes this
@leenie50 (3992)
• United States
18 Jul 10
Hi Gaby, I have no idea where this new disease came from. I guess I didn't have enough to deal with. Just another to add to the list. But don't worry Gaby, I'll do what I can to deal with it. I've gotten a lot of information from my Mylot friends. Being informed makes all the difference. So how are the boys doing? Have they settled in together? What fun they must be for you. How are you doing Sweetie? I want to know. Love Ya, Leenie
@dawnald (84146)
• Shingle Springs, California
18 Jul 10
I don't know anything about it, but it sure looks like people have given you some great information here. Seems like there are so many little understood conditions that people are suffering from. I'm sorry you are suffering from this, but here's to hoping that you will be one of the ones who go into remission quickly (and permanently). Hugs....
1 person likes this
@leenie50 (3992)
• United States
18 Jul 10
Hi Dawn, Thank you so much for your kind and well wishes. This is one disease I'd never heard of either. But since I first heard of it, I was under the impression that it was rare but now they say it isn't. We learn something new everyday. Thanks for responding Dawn. Hugsss Leenie