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Sarcoidosis in the eyes

SadieSurvived
  • By SadieSurvived · New reply 9:48 am
  • Discussion in Living with sarcoidosis · 4 replies
  • I remember like yesterday when the Retinal Specialist told me she has to inject steroids directly into my left eye! My first reaction was to haul A**! I did it twice as a matter of fact and I will do ...

Echo of the heart ~ borderline- ?

Pennings
  • By Pennings · New reply 5:08 am
  • Discussion in Living with sarcoidosis · 12 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 ...

blindness

Felicity17

Famous victims of Sarcoidosis

MrsFlu
  • By MrsFlu · New reply 12:19 am
  • Discussion in Living with sarcoidosis · 23 replies
  • I am a white, 50-year-old female and sometimes, when I try to explain that yes, Sarcoidosis can have considerable effects on one's longevity I try to give examples. Unfortunately, the only two famous ...

About to happen...our wonderful trip x x x

juliek1962
  • By juliek1962 · New reply yesterday at 11:12 pm
  • Journal · 2 replies
  • At the time of writing this i am feeling tired, shivers carrying on, but i am also oh so very excited, as recently mentioned, being newly married, we are off on a very special trip in the next few days ...

Anyone with heart Sarc please share info

volvo
  • By volvo · New reply yesterday at 11:08 pm
  • Discussion in Living with sarcoidosis · 5 replies
  • Since I have recently been diagnosed with heart Sarc would anyone be willing to share some of the things I may come to expect? I have done some research but there is nothing like sharing experiences with ...

Reach Out and Touch God (He's Waiting)

chaplainstevens
  • By chaplainstevens · New reply yesterday at 10:58 pm
  • Journal · 1 reply
  • Luke 8:46 "And Jesus said, Somebody hath touched me: for I perceive that virtue is gone out of me." This touch was not just an ordinary touch. This woman believed in her heart if she could touch even ...

diabetic neuropathy & restless leg (sarc)

LonesomePeg
  • By LonesomePeg · New reply yesterday at 10:41 pm
  • Discussion in Treatment decisions · 9 replies
  • Hi Everyone, I have sarcoidosis but I also have diabetes. Today the foot doctors dx neuropathy in both feet. Besides prescribing special shoes, they have ordered the medicine, Neurotin. to be taken at ...

God will strengthen you!

chaplainstevens
  • By chaplainstevens · New reply yesterday at 9:50 pm
  • Journal · 6 replies
  • Some days I feel like I don't have the strength to get up and go to work, but once I start moving God kicks in and I am ready to fight trough the pain.....Thank God for the endurance! Chaplain Stevens ...

April is Sarcoid Month

SadieSurvived
  • By SadieSurvived · New reply yesterday at 9:14 pm
  • Journal · 4 replies
  • Find A Cure ...

New doctor.

chemical
  • By chemical · New reply yesterday at 8:34 pm
  • Journal · 2 replies
  • So sorry I haven't been on here for awhile. Just letting everyone know that I'm doing OK. Just heard today that I'm going to have to find a new doctor since my doctor is leaving. How can I know who will ...

Sarc in the eyes, How do u know, how dose it feel

nodavis01
  • By nodavis01 · New reply yesterday at 8:13 pm
  • Discussion in Symptoms · 2 replies
  • dose it burn , or ache . What are some of the symptoms. Norma J ...

Youngest case?

Ralphetta
  • By Ralphetta · New reply yesterday at 6:25 pm
  • Discussion in Living with sarcoidosis · 12 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 ...

I need just a little help!

MsDiamond
  • By MsDiamond · New reply yesterday at 6:16 pm
  • Discussion in Treatment decisions · 3 replies
  • I my name is Channie and I sarcoidosis in my heart, lungs, eyes, skin and muscles. The disease is remission every place except my heart and muscles. Also I have rheumatoid arthritis and other medical ...

Find a Dr near Maine that will take medicare

noil31
  • By noil31 · New reply yesterday at 1:51 pm
  • Discussion in Help desk · 2 replies
  • Hi All, For me as with all of you this has been a struggle and still no real diagnosis or treatment since 2004. They mentioned sarcoidosis recently but have not made a diagnosis. I have read about this ...

our forty's

luisreyes67
  • By luisreyes67 · Posted yesterday at 1:47 pm
  • Journal · 0 replies
  • Your story is so similar to mine, I too started to go to the gym. When i get to a point that I will start coughing I stop just lifting weights and pool since I was told of sarco. it has been down hill ...

Radiation Theraphy

irishlassie1952
  • By irishlassie1952 · Posted yesterday at 11:03 am
  • Discussion in Treatment decisions · 0 replies
  • Hello fellow sarkies; Met with my DR. to discuss radiation therapy to address "severe bone marrow" issues. I have lesions in most of my spine, hip,lungs, chest and pelvis. Have been on so much medications ...

Polymyalgia rheumatica

Brsparkles
  • By Brsparkles · New reply yesterday at 7:50 am
  • Discussion in Living with sarcoidosis · 1 reply
  • Wanted to know if anyone has been diagnosed with PMR after a sarcoidosis diagnosis? Also, anyone with non Hodgkin's lymphoma prior to the above2? Life has many interesting challenges ...

Methotrexate side effects and dosage for Skin Sarc

redhulk
  • By redhulk · New reply yesterday at 1:25 am
  • Discussion in Treatment decisions · 9 replies
  • Anyone on Methotrexate for skin Sarcoidosis if yes what is the dosage and side-effects ...

The Prednisone Magic Number

picklej
  • By picklej · New reply April 22, 2014
  • Discussion in Treatment decisions · 9 replies
  • I have had the Prednisone RX filled and ready for over a month now, and today was rock bottom I took my first dose this morning. (feeling defeated because i would have been steroid-free 2 years this June ...

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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.