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

Just me

daisymae77
  • By daisymae77 · New reply 8:15 am
  • Journal · 19 replies
  • I'm tired of being defined by my diseases, I want to be just me. I don't want to constantly have doctor's appointment, I want to be just me. I don't want to be tired ALL the time, I want to be just me ...

Sarcoid Monitoring by Cell Phone Possible?

Spicetalk
  • By Spicetalk · New reply 8:07 am
  • Discussion in Treatment decisions · 6 replies
  • How would you feel about blood tests/ CT scans, and x-rays being done over the cell phone for monitoring and diagnosis? http://www.youtube.com/embed/r13uYs7jglg ...

PET Scan Results

BevN
  • By BevN · New reply 7:40 am
  • Discussion in Symptoms · 5 replies
  • I have a appt. this Wed. to discuss my next move regarding my results. I have several mediastinal & hilar lymph nodes & a couple of nodules that have an SUV value ranging frim 2.0 to 7.6. Also have an ...

From Head honcho on Vit D at Rutgers

priscurl
  • By priscurl · New reply 5:20 am
  • Discussion in Treatment decisions · 34 replies
  • There are more analytes, electrolytes and proteins involved in vitamin D sufficiency and insufficiency than just a 25OHD level. So be wary if your doctor tells you you have a deficiency based on that ...

Lonliness

Tranquility28
  • By Tranquility28 · New reply 3:14 am
  • Journal · 10 replies
  • It's so hard being only 33 and being a single mom living with this illness. I feel so alone. I don't have any friends. I feel like no one understands me . I'm devastated that my old self is gone . Now ...

Sarcadosis stage 4

myfather
  • By myfather · New reply 12:50 am
  • Discussion in Living with sarcoidosis · 4 replies
  • My Dad has been living with this disease since he was twent-five years old. He is just about to turn 64 in may. In october last year my dad got this horrible disease back after ten years of remission ...

Any input would be great

Peg1519
  • By Peg1519 · New reply yesterday at 11:43 pm
  • Discussion in Family and friends · 2 replies
  • I have a dear friend who was in Desert Storm and is suffering in many ways. One is sarcoidosis which has attacked his legs and he is unable to walk, among other things. I would love to hear any suggestions ...

Support never goes out of style

IreneMarie
  • By IreneMarie · New reply yesterday at 10:48 pm
  • Discussion in Living with sarcoidosis · 11 replies
  • This old post may brighten your cloudy day. "I’ve noticed this topic is coming up with some frequency again. This is a repost (I’ve added to it over the last yr) of how I live with “progressive” sarc ...

Coping methods Western medicine doesn't encourage

IreneMarie
  • By IreneMarie · New reply yesterday at 10:23 pm
  • Discussion in Living with sarcoidosis · 4 replies
  • You can use these gentle methods with your current health care or as part of an alternative approach before jumping into harsh drug treatment. http://www.chinese-holistic-health-exerc ises.com/index.html ...

Prayer Group for Inspire

chaplainstevens
  • By chaplainstevens · New reply yesterday at 9:04 pm
  • Journal · 121 replies
  • If anyone would like to join me at 6AM for an Inspire prayer time feel free, post your prayer concerns in the Journal and we can all touch and agree and take our request to God. All are welcome to join ...

PET Scan to determine Sarcoidosis

pills768
  • By pills768 · New reply yesterday at 6:06 pm
  • Discussion in Treatment decisions · 2 replies
  • it has been such a long time since I have been on here so firstly I give my best wishes to all ;) its nearly been a year now since I had my brain tumour removed and so far so good APART from my surgeon ...

Good News! ...And Bad News

MonicaKotnik
  • By MonicaKotnik · New reply yesterday at 1:51 pm
  • Journal · 2 replies
  • Hey Everyone! So Monday I had a CT of my lungs and an MRI of my brain. Now I haven't met with my Doc yet, but the radiologist report said my brain was normal--YAY!!! Assuming my Doc doesn't find anything ...

About the Vagus Nerve Infection Hypothesis and Chronic Fatigue Syndrome

plainTRUUS
  • By plainTRUUS · New reply yesterday at 12:40 pm
  • Discussion in Living with sarcoidosis · 7 replies
  • Michael VanElzakker’s Vagus Nerve Infection Hypothesis (VNIH) for Chronic Fatigue Syndrome may be the most intriguing hypothesis to come along in the last twenty years. If it’s correct it could explain ...

ABOUT THE ROLE OF DOCTORS

DJ2003
  • By DJ2003 · New reply yesterday at 11:11 am
  • Discussion in Treatment decisions · 19 replies
  • Hi fellow sarkies (Sorry if this term offends you) A few years back our member DragonFire posted a letter written by Dr. Rob. Perhaps many of you remember it if not let me know and I will share it later ...

Azathioprine and increased pain

Harmony69
  • By Harmony69 · New reply yesterday at 11:01 am
  • Discussion in Symptoms · 2 replies
  • Can anyone offer advise please? Start of third week on Azathioprine (Imuran) the last few days have seen an increase in existing pains, and then this morning, I have woken feeling like a truck has run ...

Frustrated

dippitydoda
  • By dippitydoda · New reply yesterday at 9:17 am
  • Discussion in Symptoms · 11 replies
  • It has been quite a few months since I had my first post on this. I know alot of you feel the way I do.....Dr tells me my ACE is not elevated so my "sarcoidosis" is not active. We all know this doesn't ...

methothexrate

stitchnhand
  • By stitchnhand · New reply yesterday at 12:09 am
  • Discussion in Living with sarcoidosis · 12 replies
  • Been on this drug for 6weks major joint pain is this normal so bad that all I want to do is sit and cry..am I being a big baby or are others feeling same way with drug ...

Pain Pump-Medro-Sarcoidosis!!!

BearsMom
  • By BearsMom · Posted July 27, 2014
  • Journal · 0 replies
  • I was doing so good after the pump. I started to drive, go places alone I went back to church I was so happy. I even took a 2hr bus trip to Alabama to play the slots. I can't remember being so liberated ...

Does your doc have a long term sarc treatment plan?

IreneMarie
  • By IreneMarie · New reply July 27, 2014
  • Discussion in Treatment decisions · 1 reply
  • Old post / same old issues. Please be patient with your body's fight against this invader. Here are some tips to help you understand that which most docs don't tell patients or don't actually know. First ...

Does any one have any other autoimmune diseases?

delfam14
  • By delfam14 · New reply July 27, 2014
  • Discussion in Living with sarcoidosis · 28 replies
  • Hi I was wondering if other's have additional auto immune diseases? I have the Uveitis, Sarcoidosis, Melanoma in-situ, and just diagnosed with Hypothyroidism also tested for antibodies and they are very ...

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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.