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

Bitching and Complaining

bulldogwinston
  • By bulldogwinston · New reply 7:16 am
  • Journal · 11 replies · Photos
  • What amazes me is you try to put something on inspirational to help others just get through their day. And there is always somebody that bitches and complains about it I just don't understand,if you don't ...

This ain't fun anymore....

Shadron
  • By Shadron · New reply 5:26 am
  • Journal · 8 replies
  • Been a while since I've been on this site. Like the changes. Been dealing with my sarcoid since 1990 now. Mainly in the lungs and lymph nodes. Been pretty costant, but bearable. That is except when I ...

Specialist

Shadron
  • By Shadron · New reply 5:21 am
  • Discussion in Help desk · 5 replies
  • Does anyone know of a Sarcoidosis specialist located in the British Columbia, Canada area? The pulmonary doctor I go to doesn't seem to be much of a specialist of sarcoid. My GP and I seem to be more ...

Please be respectful.

Shadron
  • By Shadron · New reply 5:11 am
  • Discussion in Emotional support · 7 replies · Photos
  • I recently logged into my account just 2 days on this site after being a few years away. Very quickly I've noticed some very negative and unsupportive comments by persons. Comments that have an elitist ...

Prayer Request

Seab
  • By Seab · New reply 3:27 am
  • Journal · 10 replies · Photos
  • Hi friends, I have not been posting too much lately. Yesterday my husband of 24 years went in to work, and the company laid off everyone. He had just got this job after over 3 years of unemployment and ...

My Erythema nodosum break out. May 2014

Donna4406
  • By Donna4406 · New reply 2:03 am
  • Journal · 4 replies · Photos
  • Here are some photos. Any tips for next time this happens to me ...

Does Sarcoidosis lead to Fibromyalgia?

rokkinrose
  • By rokkinrose · New reply 12:34 am
  • Discussion in Living with sarcoidosis · 6 replies
  • I was wondering if it is common for people with sarcoidosis to develop fibromyalgia. I was diagnosed with sarc in 2007 and went into remission in 2009, but I've suffered from fibromyalgia ever since ...

how do I get insurance approval for Humira

melliepeas
  • By melliepeas · New reply 12:23 am
  • Discussion in Treatment decisions · 4 replies
  • My doctors and I want me to be on Humira, I have cardiac and kitchen sink sarc, and have been on high dose medrol for 18 months, need to get off because of side affects and limited effectiveness. The ...

Neurosarcoid in the spinal canal?

mcash
  • By mcash · New reply 12:23 am
  • Discussion in Living with sarcoidosis · 14 replies
  • I am fairly new to this site so forgive me if this question has already been answered before and I'm overlooking it. I have been told since August 2010 that sarcoid is pretty rare but typically if you ...

Anyone on Imuran for Sarc?

imalou
  • By imalou · New reply yesterday at 11:04 pm
  • Discussion in Treatment decisions · 14 replies
  • Hey everyone, On my visit last Friday with the pulmonologist he said based on my symptoms and my x-ray, it indicated my Sarc was worse when compared to last year's x-ray, also my breathing test confirmed ...

Ebola update

IreneMarie
  • By IreneMarie · New reply yesterday at 10:44 pm
  • Discussion in Emotional support · 18 replies · Photos
  • Today I learned something new. Ebola is an RNA repicator not a DNA replicator. This means that with each replication a tiny segment in the chain is mutated. To me this means as it spreads if a vaccine ...

Hello....

valynn
  • By valynn · New reply yesterday at 10:43 pm
  • Discussion in Symptoms · 4 replies
  • I was diagnosed in 2000 with sarc in my lungs. Now I wake up with shaking and my hands continue to shake all day..I am also having moments where I am sitting still but it feels like I am still moving ...

Beyond the Fog

alicia191
  • By alicia191 · New reply yesterday at 10:42 pm
  • Discussion in Living with sarcoidosis · 8 replies
  • Hi everyone. I have neurosarc and have recently had some new symptoms come forward. All kinds of brain fog with the usual confusion and forgetfulness are a way of life of life for me, as are mild feelings ...

Chronic apain - need to find a doctor in Chicagoland to help me

bnagel1976
  • By bnagel1976 · New reply yesterday at 6:59 pm
  • Discussion in Living with sarcoidosis · 9 replies
  • I have neuro sarcoidosis. Lost an eye, was paralyzed from lesions on brain stem and spinal column. I had to learn to walk again at 30. I am doing well but the neuropathic pain in my feet is unbearable ...

Results back. Lung Sarc.

BevN
  • By BevN · New reply yesterday at 6:06 pm
  • Discussion in Living with sarcoidosis · 15 replies · Photos
  • I can't take pred due to terrible side efffects so I am on 2.5 mg. of Methotrexate once a week. My husband particularly doesn't understand the bone tired fatigue & the arthritis I have in my knees, elbows ...

Fatigue and Brain Fog

dwpeter
  • By dwpeter · New reply yesterday at 5:14 pm
  • Journal · 15 replies
  • Ok. How do I start a journal. I'm really not good at telling others how I'm really feeling. Whenever anyone asks me, "How are you?" my response is typically, "Fine. Thank you.". OK fellow Sarcs, I'm sure ...

thought for the day

bulldogwinston
  • By bulldogwinston · New reply yesterday at 4:11 pm
  • Journal · 4 replies
  • integrity is never painless ...

Life and Death

bulldogwinston
  • By bulldogwinston · New reply yesterday at 3:39 pm
  • Journal · 8 replies
  • When we shy away from death, the ever- changing nature of things, we and inevitable shy away from life ...

OUR EYES AND SARCOIDOSIS

LaiLani
  • By LaiLani · New reply yesterday at 2:10 pm
  • Discussion in Treatment decisions · 5 replies
  • Tomorrow I FINALLY get to see the eye doctor. I so hope nothing is found concerning sarc. Or Sjorgrens for that matter. My last ophthalmologist had some concern with this. I have had an infection near ...

Gall Baldder

mwynn2
  • By mwynn2 · New reply yesterday at 2:04 pm
  • Discussion in Living with sarcoidosis · 25 replies
  • Has anyone had any gall bladder involvement with sarc. I had been fighting high blood pressure and the classic flare up blues for months now. Then Monday morning I woke to what I thought was extremely ...

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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.