Sarcoidosis Support Group

Sarcoidosis is an immune system disorder characterised by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected, however, granulomas most often appear in the lungs or the lymph nodes. Symptoms can occasionally appear suddenly but more often than not appear gradually.

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Lungs & Respiration
/ Sarcoidosis Support Group

New to Sarcoids, and here

deleted_user
deleted_user
Hello. I do not have Sarcoids, my spouse does. We just received a confirmed diagnosis yesterday. It feels like our biggest problem is no one knows what to expect. Right now there is a problem with breathing, but we don't know what will happen next. I guess I'm just looking to talk to people who have been dealing with it to find out what to expect, how bad could it get.
Thank You
deleted_user
deleted_user
HI
i have sarcoid i was diognoses 5 years a go evryone is diffrent and sarcoids effects evryone diffrently the most importent thing that i found was regular check ups and taking the mades properly no matter the side effects. Helps keep evrything from getting out of controle.
deleted_user
deleted_user
The meds may make him cranky and hard to live with. Remember it is the meds talking, tell him to listen to his body, rsst when he is tired --try to keep a positive attitude. Keep thinking about what it will be like when he is well again.
What are his symptoms?
deleted_user
deleted_user
I'VE HAD SARCOID FOR OVER 25 YEARS AND THE MAIN THINGS I'VE LEARNED IS TO LISTEN TO YOUR BODY. GET PLENTY OF REST, STAY AS STRESS FREE AS POSSIBLE, TAKE YOUR MEDS, GET REGULAR CHECKUPS (MEDICAL& EYE EXAMS). THE MOST IMPORTANT THING IS TO KEEP A POSITIVE ATTITUDE.
SARCOID AFFECTS EACH PERSON DIFFERENTLY. FEEL FREE TO ASK ME QUESTIONS, IF YOU HAVE ANY. GOD BLESS. TAKE CARE, STAY POSITIVE.
deleted_user
deleted_user
Hi-
I would tell you not to read too much about the disease online!! Not everything you read is true. And like everyone said sarcoids takes a different path for all of us. There's no way to predict what will happen next. Trust me--I would love to know what's around the next corner with this disease. I have neuro, which started in my lungs--or so we think--they'll never know, but I have friends who have it and it never left there lungs and they never medicated. It went away for them. So remain hopeful and know we are all here for you if you have questions. And if you doubt what your doctor says at any time don't be afraid to get another opinion--not all doctors are schooled in sarcoids and how to treat it! I hope you have a great day today!! :)
--jenn--
deleted_user
deleted_user
My husband has had diagnosed Sarcoidosis since 2003. They think it started in his lungs. But the diagnosis came about when he began having neuro deficits. Now they think it is in the bones of his spine and possibly his hands. Just as everyone has said, it is a hard to tell what will be in the future for your spouce. Each case is so different. And many doctors have only treated 1-2 cases. My husband goes to 3 specialist now and possibly more to come.
Advice: Always go to the Droctors office with a list of questions. Stay connected with a support group. To learn more about Sarcoidosis, only go to University or Research affiliated websites. Have patience with your spouce and try to stay positive.
deleted_user
deleted_user
Welcome to the group!!! I f you have questions just ask.
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