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All new and active discussions & journals
please help a new comer
- By Akhilluvs · New reply 4:51 pm
- Discussion in Living with sarcoidosis · 7 replies
- Hi , I am 25 , married and was diagnosed about 2 and a half months back with sarcoidosis, Dont know much about that as being an Indian in India i never heard of it , after came to Ukraine and lived here ...
Chest CT Images
- By mvaughn1018 · New reply 4:50 pm
- Discussion in Treatment decisions · 1 reply
- I had another chest ct scan with and without contrast. I have the images and looked at them. Of course, my education is in accounting and not medicine; (I have no idea what I'm looking at). I was looking ...
Track your test results with my new String Chart
- By IreneMarie · New reply 4:47 pm
- Discussion in Symptoms · 15 replies
- My String Flow Chart for tracking blood testing results is finally ready for uploading. It takes a little bit of patience to modify this Excel spread sheet, but on a rainy day it's rather like a game ...
Muscle cramps anyone?
Rabid Barking Lymph Nodes 76-81
- By theGardener · New reply 4:08 pm
- Journal · 19 replies
- LINER NOTES: Doctors, Bosses, Patients, Siblings, Teens...Deli Meats... Oh my! Captain Sarc Awareness to the Rescue! (please scroll down) (keep scrolling down...sorry) To read Rabid Barking Lymph Nodes ...
Kidney Stone Earrings and Necklace
- By kimkahuna · New reply 4:02 pm
- Journal · 22 replies
- Tomorrow I am going in to see if the urologist can move a large stone out of my uterer. Many more in the upper part of both kidneys and something unknown in my bladder. Hopefully they can be removed ...
My heart died........
- By Brandie228 · New reply 3:56 pm
- Journal · 5 replies
- So, for a bit of a flashback, I'm going back to the summer that I turned 16. It started something like this; For my 16 birthday I received a phone call from my old foster mother. She wished me happy birthday ...
Cancer has returned
- By bizzyfingers2009 · New reply 1:48 pm
- Journal · 31 replies
- The fight is not over yet...Started back on chemotherapy 10/05. Carboplatin and Taxol. The road is long, and bumpy but I will make the trip ...
Contacts and uveiitis?
- By pearlsnowflake · Posted 1:34 pm
- Discussion in Living with sarcoidosis · 0 replies
- Just wondering if anyone with uveitis can wear contacts. One eye doc tells me forget about it those days are over and another has told me it is not a problem when there is no inflammation present in the ...
Is my immune system giving up on me?
- By MrsUyarlar · New reply 12:17 pm
- Journal · 3 replies
- Well for the last past 2 months my back started to hurt again, and now its huritng like hell! Also i have to seed the gastrologist cause i might i have a another problem. And not just that im very congested ...
prednisone and acne
- By coleburrell · New reply 12:11 pm
- Journal · 3 replies
- i have been taking prednisone for my sarcoidosis for 3 weeks. and my back and arms are severly broke out in what seems to be acne bumps. has anyone else have this happen and if so is it normal? or is ...
pains
- By feliz · New reply 12:04 pm
- Journal · 4 replies
- For the last few days my pains have getting worse, especially my shoulders and lower back, I have a burning pain on my back, shoulders , right hip and leg, my chest feels like someone is sitting on it ...
cold and hot feelings
- By HopeNicole · New reply 11:40 am
- Discussion in Living with sarcoidosis · 3 replies
- My hands stay so cold! Esprcially at nite. I just asked my son to look for me a pair of gloves to wear while I type. My feet are cold alot to but not as much as the hands. Also sometimes wen I lay down ...
remicade
- By Cakebaker · New reply 11:38 am
- Discussion in Treatment decisions · 9 replies
- my pulmonologist wants me to see a reumy and start with remicade infusions. Does anyone here currently do this? What side effects have you had and does it seem to be effective? I have sarcoid in my lungs ...
The next part.....
- By Brandie228 · New reply 11:30 am
- Journal · 1 reply
- I forgot to mention that around the time I found out that I would need an arthroscopy, I also found out that I had Morton's Neuroma. Kind of like Sarcoidosis, you think that the doctor mis-spoke when ...
Does anyone get flu like symptoms?
- By silvercivic · New reply 11:13 am
- Discussion in Symptoms · 39 replies
- I have a feeling like I have a bad case of the flu minus any temperature.....chills and just feeling rotten. I just want to lie down and try to cope with it. If anyone else suffers from this....are these ...
Somebody PLEASE HELP!!! ={
- By pwrsrg77 · New reply 10:54 am
- Journal · 81 replies
- Well, I'm now 2 years into a disease that is sucking the life out of me. If I had a nickel for every time I've balled my eyes out & said my famous quote "I can't take this anymore" I'd be a very rich ...
really good book
- By tishee · New reply 10:41 am
- Discussion in Emotional support · 16 replies
- Did anybody read the book written by Karen Duffy ( "Duff" vj from vh1 in the 90's) It was such a good book for us sarkies. She came down with it in her early 30's. It helped me alot in the beginning ...
Sarcoid specialist in VA,MD,NC
- By steelerfan · New reply 10:40 am
- Discussion in Treatment decisions · 4 replies
- I have been told by my pulmonologist to seek advice on my spleen from a sarcoid specialist. Of course that is easier said than done. Any ideas in this area of dr's who specialize in sarcoid, especially ...
Anyone ever go into remission a 2nd time???
- By teeteeme · New reply 10:14 am
- Discussion in Living with sarcoidosis · 1 reply
- What I don't get, is that when someone has "cancer" its a horse of a differnet color! Then they can come out and talk about it, everyone wants to listen.There is no new info, what do they want to hear ...
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Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration. The Stop Sarcoidosis Support Community is sponsored by the Foundation for Sarcoidosis Research in partnership with Inspire.