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NEED input-NeuroSarc, to Cellcept or not?

  • By CJE4859 · New reply 11:29 am
  • Discussion in Treatment decisions · 3 replies
  • A mass/lesion was discovered in my spinal cord between c2-c6. I have undergone extensive testing (4 mri's, gallium scan,2 lumbar punctures, etc). The doctors can't biopsy the lesion, given its location ...

Sad but true...

  • By chaplainstevens · New reply 11:21 am
  • Journal · 15 replies
  • Sometimes death is hard to accept, especially for people of faith. I had to explain to a family that refused to believe a family member was dead, they were praying God would revive them....sigh. Then ...

Am I ever going to feel better?

  • By Casie78 · New reply 9:36 am
  • Discussion in Living with sarcoidosis · 12 replies
  • I feel like I'm always whining these days. On the Prednisone roller coaster, and no end in sight. I feel like I just started this journey with no clue what might happen. I really thought I would be feeling ...


  • By robrich28 · New reply 9:30 am
  • Discussion in Living with sarcoidosis · 9 replies


  • By plainTRUUS · New reply 8:55 am
  • Discussion in Living with sarcoidosis · 9 replies
  • For those interested in keeping up on the latest I recommend subscribing to the site below. I registered a year or so ago and get notifications of new editions by e-mail. It is free (so far). ...

Why D may not be so good for systemic sarc.

  • By priscurl · New reply 8:46 am
  • Discussion in Treatment decisions · 36 replies
  • Hi people, You know I am mad. I found a fascinating paper and wanted to comprehend what it is saying regarding the effects of 1,25D in sarcoidosis. This is not just about hypercalcemia, this is about ...

Youngest case?

  • By Ralphetta · New reply 8:15 am
  • Discussion in Living with sarcoidosis · 7 replies
  • I'm wondering if anyone knows what the youngest reported case of Sarcoidosis is. I was diagnosed around age 40 and my nephew was about 31. I haven't heard of any really young people with it, but would ...

Chronic spontaneous urticaria and angioedema

  • By dryzeabone2012 · New reply 8:11 am
  • Discussion in Triggers · 3 replies
  • Today I attended a hospital in Oxfordshire as I had been suffering with swellings of the lips and face and also hive like rashes on my body. This has been going on for about 4 months. I thought it was ...

Shocking. It doesn't and won't happen in Oz (D)

  • By priscurl · New reply 7:45 am
  • Discussion in Living with sarcoidosis · 16 replies
  • e-debate-on-merits-of-fortified-foods-54 10488.php This little article is about fortification of food with vitamins. In Australia, only some breakfast cereal ...

what the sarc is wrong with me this time?

  • By Mamalady · New reply 7:03 am
  • Discussion in Symptoms · 4 replies
  • i was sitting at my desk minding my business when all of a sudden i felt as though i was having a heart attack. i wound up in the hospital with inverted t-waves. had a echo test done and even an angiogram ...

North West Social Meeting - Sunday 27th April - 11am

  • By McGuckenr · Posted 5:40 am
  • Discussion in Emotional support · 0 replies
  • Dear All, Hope you are well and have had a lovely Easter. The next meeting will be on Sunday 27th April at Bents Garden centre at 11am. The details are below: Bents Garden Centre Warrington Rd Glazebury ...

More symptom questions

  • By dinorino · New reply 4:04 am
  • Discussion in Symptoms · 5 replies
  • My sarcoidosis has scarred my lungs, affected my eyesight, and caused painful skin erruptions on my back, scalp and legs, Now, I am nearyly nighly experiencing a fever like condition in my lungs that ...

Steps Forward

  • By Tmac187 · Posted 1:40 am
  • Journal · 0 replies
  • Everytime I try to Take steps forward in a positive way bad news drags me back.For twenty months nothing but bad news does anyone have any good news to keep me going ...

Length of treatment

  • By nanners74 · New reply 12:55 am
  • Discussion in Treatment decisions · 5 replies
  • Just started treatment for my sarc. Wondering how long treatment last and if sarc symptoms return after treatment stops. I have no lung involment but swollen salivary gland and lymph nodes in neck. Was ...

Tendon problems

  • By Dwing186 · New reply yesterday at 11:29 pm
  • Discussion in Symptoms · 12 replies
  • I have sarc and have tendon problems with tennis elbow and DeQuervain's, trigger fingers, etc. Anyone else ...

erroded sinus cavities

  • By thomka · New reply yesterday at 11:06 pm
  • Discussion in Symptoms · 4 replies
  • I had constant sinus infections and still do in 2009 had sinus surgery was showed my abnormal sinus cavities this was by the ENT no biopsies this was before pulmonary sarcoidosis was diagnosed .Did not ...

Echo of the heart ~ borderline- ?

  • By Pennings · New reply yesterday at 10:53 pm
  • Discussion in Living with sarcoidosis · 6 replies
  • Back in January (2014) I had an echo of my heart after the pulmonologist ordered it. The nurse called me after a week and told me it was borderline. She also told me that the doctor recommended I have ...

Why I'm bald when I don't have cancer.

  • By Casie78 · New reply yesterday at 8:02 pm
  • Discussion in Living with sarcoidosis · 8 replies
  • Not completely related to Sarcoid, other than the fact that it's my life, so everything involves being a Sarkie. On March 8th I participated in a fundraiser called St Baldricks, where you raise money ...

Things that can help relieve STRESS

  • By chaplainstevens · New reply yesterday at 7:55 pm
  • Journal · 8 replies
  • 1. Go outside and breathe fresh air get out of the house 2. Do something for yourself.....go get your favorite milkshake and just chill 3. Go see a funny movie 4. Go visit someone that you love 5. Talk ...

Thumper is coming out

  • By annteget · New reply yesterday at 4:18 pm
  • Journal · 6 replies
  • Thumper (that's what my husband, Steve, lovingly calls my pacemaker) is coming out next Wednesday, April 23. That's right. Less than five months since my little Boston Scientific device was implanted ...

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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.