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Pulmonary embolism - Sarcoidosis

newburycottage
  • By newburycottage · New reply 6:46 am
  • Discussion in Living with sarcoidosis · 5 replies
  • I had a laparoscopic hysterectomy in July 2014. Two weeks later I went to the Emergency for pain in my chest when taking a deep breath. I had a very elevated d-dimer blood test followed by a CT scan that ...

A New Chapter Begins....

lizah77
  • By lizah77 · New reply 6:15 am
  • Journal · 2 replies
  • Hello everyone, since 2013 I started noticing lifted scars on my legs from when I fell from a car in college, did not think to much of it, just the fact that they were quite unsightly and I would have ...

Lymph node enlargement

Kazooky
  • By Kazooky · New reply yesterday at 11:29 pm
  • Discussion in Symptoms · 23 replies
  • The lymph node in my lung has gotten slightly larger and I am afraid it's cancer. Pulmonologist said he did not think it was and said no to biopsy now. I'm very scared would appreciate comments on this ...

swollen feet

frenchyman
  • By frenchyman · New reply yesterday at 11:17 pm
  • Discussion in Living with sarcoidosis · 10 replies
  • I now have neurosarcoidosis along with pulmonary and liver, and was wondering if anyone else is suffering from swollen feet as mine have balloned up and are really sore ...

Maybe I am different

JamesN
  • By JamesN · New reply yesterday at 10:20 pm
  • Discussion in Living with sarcoidosis · 10 replies
  • 3 years ago I started my quest... The Quest to figure out why I was coughing all the time, non stop. I am a very active man, been to work in Iraq, Afghanistan, and many other places around the world ...

Dreading, and worried are just two words out of many i could use

denise101161
  • By denise101161 · New reply yesterday at 8:58 pm
  • Discussion in Living with sarcoidosis · 4 replies
  • I have had blood test an x-ray and lung function test, I have an appointment with the consultant in a couple of hours today, and i am so worried as i no my sarc has got worse because of my painful joints ...

"Last resort" resorted to and failed...help?

sarcoidosisjenn
  • By sarcoidosisjenn · New reply yesterday at 8:21 pm
  • Discussion in Treatment decisions · 9 replies
  • Hi there, I haven't posted in a while as I started my own blog (and to spare you all from the "woe is me" sort of posts). But I am in a pickle and need help before my next Rheumatologist appointment ...

Finding a sarcoidosis doctor in California

Mythreesons3
  • By Mythreesons3 · New reply yesterday at 8:02 pm
  • Discussion in Treatment decisions · 2 replies
  • Here I am ,one year after being diagnosed with Sarcoidosis , facing another PET scan, then probably another biopsy.Sound familiar?I need to find a Sarcoidosis doctor in California because my Lymphoma ...

feels like fire ants and severe burns

wishing4wings
  • By wishing4wings · New reply yesterday at 11:01 am
  • Discussion in Symptoms · 11 replies
  • My lips, face and limbs feel like they have been burnt. Sometimes I feel like fire ants are biting my legs. Other times, it feels like bubbles are popping under the skin on my legs. Anyone ever heard ...

Lymthopdema in the leg's

Chrissie55
  • By Chrissie55 · New reply yesterday at 8:22 am
  • Discussion in Living with sarcoidosis · 18 replies
  • It has been some time now , years even scencie i have spcken to any body on this site. lot;s off thing's have been going on with my condistion ,that it stared to get me down. I have been very ill ,just ...

autoimmune-paleo diet

gch88
  • By gch88 · New reply yesterday at 8:04 am
  • Discussion in Treatment decisions · 5 replies
  • Hi, I was wondering if anyone has tried the autoimmune protocol diet. I've read a lot about it and it was recommended by a rheumatologist who "prescribes" it for autoimmune illness and used it herself ...

Chest Pain with Sarcoidosis

lookingforanswers2
  • By lookingforanswers2 · New reply yesterday at 7:56 am
  • Discussion in Living with sarcoidosis · 11 replies
  • I've had chest pains for a number of years now. A nurse practitioner suggested it was my chest muscle. My pulmonologist told me she dealt with the functioning of the lung (implied was that chest pain ...

Weight loss

Nakehi
  • By Nakehi · New reply yesterday at 6:45 am
  • Discussion in Living with sarcoidosis · 4 replies
  • I am losing a lot of weight and very tired, is this common ...

North West Social Meeting - Sunday 10th May 2015

McGuckenr
  • By McGuckenr · New reply May 20, 2015
  • Discussion in Family and friends · 3 replies
  • Dear All, Hope everyone is enjoying the bank holiday. I’m sorry for the short notice but I have forgotten to advertise the next North West Social Meeting. We agreed at the last meeting it would be on ...

Make your voice heard

drugpedaler
  • By drugpedaler · Posted May 20, 2015
  • Discussion in Living with sarcoidosis · 0 replies
  • I recently joined the FSR patient registry to make my voice heard beyond our patient community. Have you registered? The information can be used by researchers and doctors to understand how sarc affects ...

Tattoo Sarcoidosis?

jontex
  • By jontex · New reply May 19, 2015
  • Discussion in Symptoms · 41 replies · Photos
  • I was diagnosed with Sarcoid 2 years ago. I have tattoos on each of my upper arms. A feww weeks ago i started to develop bumps in each of these areas but only where the tattoo ink is. They keep "bubbling ...

What does normal feel like?

bnyboy
  • By bnyboy · New reply May 19, 2015
  • Discussion in Living with sarcoidosis · 10 replies
  • People through no fault of there own are always telling me I look " normal" and quite healthy except for the 10kgs I have put on thanks to pred! But it get's me thinking what did normal feel like? I have ...

Is anyone on both Remicade and CellCept?

debbyelaine
  • By debbyelaine · New reply May 19, 2015
  • Discussion in Treatment decisions · 11 replies
  • I am on CellCept, Plaquinal, Medrol and a variety of neurological medications . My Rheumy is talking about beginning Remincade Infusion in high doses for 6 hrs at a time. Does anyone else continue their ...

Sarcoidosis Specialist at Northwestern

lookingforanswers2
  • By lookingforanswers2 · New reply May 18, 2015
  • Discussion in Living with sarcoidosis · 6 replies
  • I live in Chicago and I'm looking for a sarcoid specialist at Northwestern Hospital in Chicago. Anyone know of any? OLS58 ...

enteritis/tendons/ligaments-advice?

gch88
  • By gch88 · New reply May 18, 2015
  • Discussion in Symptoms · 15 replies
  • Hello, I am an otherwise healthy 37 year old woman. I was diagnosed with sarcoidosis of the lymph nodes through a biopsy in February this year. I do not have sarcoidosis in any other organ system that ...

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Help and information from FSR

Sarcoidosis and the Body
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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About this community

The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Foundation for Sarcoidosis Research, an Inspire trusted partner.