The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Cns sarc?

  • By Ryen · New reply 1:50 pm
  • Discussion in Symptoms · 3 replies
  • I have been having excruciating pain from my right butt cheek, right testicle and my right knee. My neck is throbbing and my head is numb only on the left side. I had a 2nd back MRI over a month ago that ...

Second cousin has sarcoidosis

  • By coolkathyann · New reply 1:17 pm
  • Discussion in Help desk · 5 replies
  • My second cousin lives in Pottstown, PA. She told me today that she was diagnosed with sarcoidosis in 2006. She had Chest XRays and a lung biopsy in Philadelphia. She takes steroids for treatment. Her ...

February 5th London, UK support group - with a TWIST!

  • By Tofumonkey · New reply 12:18 pm
  • Discussion in Living with sarcoidosis · 6 replies
  • February 5th London support group at Kings College Hospital - if you can make it to this one please do! Get that wheelchair freshly polished and your disabled parking badge out! Special guests planning ...

01-29-15 Picture

  • By RonLS · New reply 12:16 pm
  • Journal · 4 replies · Photos
  • Cabbage White Butterfly, Lovell, Wyoming The past few days have be just gorgeous here, but it makes me long for the flowers of spring and their fragrance to be intertwined with sage and just the smell ...

eczema and psoriasis, common genetics?

  • By uveitisguy · New reply 10:45 am
  • Discussion in Living with sarcoidosis · 14 replies
  • 18210.pdf eczema and psoriasis can occasionally co exist in sarcoidosis patients. in systemic sarcoidosis, the IL12/23R to IL17 and TNF A pathways can be linked ...

Finally Diagnosed "why am I happy?"

  • By bebeeann · New reply 9:49 am
  • Discussion in Living with sarcoidosis · 10 replies
  • Hello to All: Today, It was finally confirmed after seeing several specialists that I do have Sarcoidosis. It has been a long road to this diagnosis. I have been through many tests and after seeking a ...

D and calcium metabolism tests

  • By priscurl · New reply 8:09 am
  • Discussion in Treatment decisions · 12 replies
  • Calcium - High (hypercalcemia) causes include: Primary Hyperparathyroidism - caused by parathyroid adenoma pumping out too much PTH. Secondary Hyperparathyroidism - vitamin D deficiency (usually on slight ...

In Need of Inspiration???

  • By chaplainstevens · New reply 1:20 am
  • Journal · 13 replies · Photos
  • I was at the VA Hospital yesterday and I was having a rough day, pain from the Sarcoidosis is getting worst. So I was having a conversation with God about how I can't wait to get to heaven so I could ...

Sacoidosis Lung Xray Without Scar Tissue

  • By Elearn4life · New reply yesterday at 9:26 pm
  • Discussion in Living with sarcoidosis · 8 replies · Photos
  • After 17 years I thought my new doctors wanted me gone when they said I had a normal xray; but when the pulmonary specialist confirmed I rejoiced. At 52 I thought someone was pulling my leg. I still have ...

Tiny toilet brushes and straight up lies (eye hospital hell)

  • By Tofumonkey · New reply yesterday at 5:43 pm
  • Journal · 13 replies · Photos
  • I had a fairly weird moment today when I I walked into the eye hospital and came out an hour later with much more pain and injury than when I went in. I woke up this morning with a throbbing pain in my ...

01-28-15 Picture

  • By RonLS · New reply yesterday at 3:04 pm
  • Journal · 2 replies · Photos
  • Poplar trees against the storm, Lovell, Wyoming The cold north wind was pushing a dark and oppressive storm cloud toward Lovell in late October but a crack in the clouds allowed the sun to illuminate ...

Questions: What lung disease is like sarc

  • By LemonDream · New reply yesterday at 12:45 pm
  • Discussion in Symptoms · 14 replies
  • ... but make worse by prednisone? I have seen it mentioned here before. Can't find it in search ...

Disappointed In The Cleveland Clinic

  • By minerva · New reply yesterday at 9:46 am
  • Discussion in Living with sarcoidosis · 56 replies
  • No. I did not expect miracles, I did however, expect more knowledge about Sarcoid and less assembly line treatment. I don't want to go into the long details but I am not at all impressed by their pulmonary ...

Loss of a dear Friend

  • By LollyG59 · New reply yesterday at 8:20 am
  • Journal · 13 replies · Photos
  • My heart is aching with the loss of my dear friend of over 20 years. I celebrated my 55th Birthday on Dec. 27th and the next day got a call that my dear friend, Pam, took her life on my Birthday. She ...

lung transplant

  • By lol2000 · New reply yesterday at 6:56 am
  • Discussion in Living with sarcoidosis · 5 replies
  • Hi I was just told I am a candidate for lung transplant. But this kind of scary need info from my Sarcoidosis family. I just do not know if I want to put my name on the list. I have heard good and bad ...

dizzyness and weakness and flutting in my left leg

  • By cglover58 · New reply yesterday at 6:34 am
  • Discussion in Symptoms · 2 replies
  • I have had dizzy spells for about 7 years now. They started when I would drive 1 1/2 hours to be home for the weekend. They scared me but now they are worse. I had one today at work, I walked out of my ...

01-26-15 Picture

  • By RonLS · New reply yesterday at 3:33 am
  • Journal · 5 replies · Photos
  • OOPS! I didn't notice I had not posted the 26th's picture on here. So, it may be late but hopefully it is still enjoyable! :) ________________________________________ ____ Canada Geese Beach Party, Lovell ...

01-27-15 Picture

  • By RonLS · New reply yesterday at 3:32 am
  • Journal · 4 replies · Photos
  • Wild Turkeys, Yellowtail Wildlife Habitat Area, Lovell, Wyoming On a warm evening in the middle of October the breeze was swirling around creating such a magnificent smell of fall. As I sat at the edge ...

Neuro-Sarcoidosis and Cataract Surgery

  • By LoopyLorrie · New reply January 28, 2015
  • Discussion in Living with sarcoidosis · 4 replies · Photos
  • Went to the eye doctor yesterday and found out that I will need surgeries in Feb. & March on both eyes (2 separate procedures). I used to heal very quickly from surgery, but due to NS and the meds that ...

Gtatitude, a short video clip

  • By uveitisguy · New reply January 28, 2015
  • Discussion in Emotional support · 12 replies
  • 9/GratitudeHD#.VLVnbs3yymY.facebook this is an inspiring short video on gratitude that made my day! I don't normally post links to videos. this made me reflect ...

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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.