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...
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment11 Comments
Its actually a biopsy of the tissue that diagnoses sarcidosis. There are a lot of sarcoidosis support groups on facebook.
February 14, 2018 - 6:49pmThis Comment
My husband has sarcoidosis and due to Hurricane Harvey her in Orange Texas I (wife) am exposed to mold daily while they repair my office. Can my exposure cause issues for my husband?
September 15, 2017 - 11:43amThis Comment
I have been suffering from (SARCOIDOSIS) disease for the last four years
August 28, 2017 - 11:27pmand had constant pain, especially in my knees. During the first year,I had
faith in God that i would be healed someday.This disease started circulate
all over my body and i have been taking treatment from my doctor, few weeks
ago i came on search on the internet if i could get any information
concerning the prevention of this disease, on my search i saw a testimony
of someone who has been healed from (SARCOIDOSIS) by this Man DR GODWIN and
she also gave the email address of this man and advise we should contact
him for any sickness that he would be of help, so i wrote to DR GODWIN
telling him about my (SARCOIDOSIS) he told me not to worry that i was going
to be cured!! hmm i never believed it,, well after all the procedures and
remedy given to me by this man few weeks later i started experiencing
changes all over me as the DR assured me that i have cured,after some time
i went to my doctor to confirmed if i have be finally healed behold it was
TRUE, So friends my advise is if you have such sickness or any other at all
you can email DR GODWIN on [email protected] sir
i am indeed grateful for the help i will forever recommend you to my
friends!!! with your lovely Email Address [email protected]
or you can also call him on this number
+2349063798253
This Comment
Hi Kamini - Thanks for writing and sharing your situation with us. I'm sorry to hear about your mom, and that you are dealing with your own health problems. It's good to know that writing helps you to feel better - I feel the same way.
Scientists really don't know what causes sarcoidosis but they believe it's related to malfunctioning of the body's immune system. The disease may possibly be triggered by an infection or exposure to a toxin in the environment. Scientists also believe that some people may be more susceptible to sarcoidosis due to genetic or environmental factors. It is more common in people who are of African-American, Northern European, Scandinavian, and Irish descent. Researchers are still trying to pinpoint the genes and trigger substances that may be associated with sarcoidosis. There aren't any indications at this time that depression or stress would be a direct cause.
I'm going to provide a link to our section on sarcoidosis, as well as some additional articles with information on the causes, symptoms and treatment. The last link is to a directory of US support groups. If you're not in the US just let me know what country you're in and I will see if I can find a group for you there. I hope you will find this information helpful, and wish you well as you continue your testing.
Take care,
Pat
https://www.empowher.com/condition/sarcoidosis
http://www.mayoclinic.com/health/sarcoidosis/DS00251
http://www.medicinenet.com/sarcoidosis/article.htm
http://www.sarcoidlife.org/
December 30, 2010 - 5:49pmThis Comment
Hi .
My name is Kamini, my mum was diagnosed with sacoidosis of the lungs, two years ago. At first, we went through hell...she was ill all the time...bed ridden. We thought we were going to lose her. Then, finally with the rock steady help of my uncle, a GP, it was detected. They intially suspected tb, as my dad and sister had this condition. they are very similar, the granulomars are different in a scan it can be detected.
About a month ago, i started to have all the symptoms{fevers, night sweats, head aches, body and joint pain, weakness and generally tired all the time. It was different from my mums. The first thing I did was consult her. Gps thought flu, I knew my body. At the momemt my uncle is doing ace levels test...it could be in my liver. much better than the lungs.
Is it genetic or stress related...i was under heavy stress and my mom contracted after my gran (her mom) and my dad passed away. Is the cause depression?
Also, there is alot of mould in my mums home?
Writing about it makes me feel better...we need to find the cause.
December 30, 2010 - 7:41ammy family and husband are very supportive, I am lucky.
This Comment
Thank you to all you brave women posting comments on sarcoid. What a confusing and difficult disease to understand, even to the doctors. I was dx a year ago, then had a clear scan, but now another shows my sarcoid is back. Its in my eyes, sinuses and lungs. My lung doc and I decided no meds for now, I am post menopausal and that could present issues. I have good days, bad days..and all inbetween. It may also have gone neuro...am waiting to find out but honestly wont be surprised. The best thing going for me? A dear friend helps take care of me, the most understanding person I could have asked for. I was not sick before we lived together and it seems it doesnt make a difference, I could never do this by myself so you can imagine how lucky I feel. Family is not so understanding, as in many cases. I feel so fortunate to live where I do, have good doctors and someone who understands. It is a scary disease. It is far too easy to get carried away with so much negative so I try hard not to do that. One day at a time.
December 10, 2009 - 8:37amThis Comment
Hi Leslie - Thanks for sharing your story with us. It means so much to know there are others who share the same issues and concerns, but it's even more valuable to hear from someone who's moving forward and taking charge of her situation the way you area. Indeed, many people find that family members just don't get it, but sometimes you have to make your own family in order to what's best for your health and well-being. I hope you will stay in touch with us and let us hear from you from time to time. Or, if you have questions or need information, we would be happy to help.
December 10, 2009 - 5:52pmTake good care,
Pat
This Comment
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.
April 28, 2009 - 9:40amThis Comment
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.
March 30, 2009 - 6:59pmThis Comment
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.
March 30, 2009 - 10:58amThis Comment