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New Excel String Chart to track Blood Work
- By IreneMarie · New reply 8:09 pm
- Discussion in Living with sarcoidosis · 7 replies
- My String Flow Chart for tracking blood testing results is finally ready for uploading. It takes a little bit of patience to modify this Excel spread sheet, but on a rainy day it's rather like a game ...
Bumping this up for new members who to get Sarc data organized
- By IreneMarie · New reply 8:07 pm
- Discussion in Living with sarcoidosis · 82 replies
- Hi fellow Sarcies, Just thought I would bump this up for those interested in getting their info organized..... easy Excel print outs to get started, give direction to and get more out of your health care ...
What's the deal with depression?
- By stevieb · New reply 8:07 pm
- Discussion in Living with sarcoidosis · 1 reply
- Totally unreasonable, unrelenting, totally consuming depression. I just want to cry, and why? Is this sarcoid, is this normal? I've had this for several years and just can't seem to move beyond this stupid ...
SUN
- By pebbles1962 · New reply 8:01 pm
- Discussion in Help desk · 3 replies
- I am going on a cruise in march and have got to stay out of sun which in Caribbean is impossible. I take 20mg methatrexate will be wearing hat high factor cream etc but has anyone got any real advise ...
Weaning off of Prednisone
- By Margie74 · New reply 7:46 pm
- Discussion in Living with sarcoidosis · 11 replies
- My doctor started me off with 20mg/day of Prednisone. My dose has just been dropped to 15mg to try to wean me off. I am amazed and disappointed that I can tell the difference between the 2 doses. Although ...
Offering templates to compile Pt Med INfo from caregiver perspective
- By Eosboriken · New reply 7:30 pm
- Discussion in Help desk · 11 replies
- After being taking care of my husband for the last 3 years, and having "wonderful" experiences with the healthcare system, I have decided to create a series of templates which can help to compile all ...
Who as been shocked by their ICD?
- By mvaughn1018 · New reply 7:22 pm
- Discussion in Treatment decisions · 3 replies
- I just came back from the e.p. cardiologist. They can't decide what to do with me. They know I'm having ventrical arrithymas. They can't determine if I have cardiac sarc. They are concerned and want to ...
Mononucleosis
- By NDLindy · New reply 5:17 pm
- Discussion in Living with sarcoidosis · 2 replies
- Has anyone heard of any links to Mononucleosis? I was in the hospital for 11 days at age 15 (I am now 59) and I missed 3 months of school. It was also a little known desease at that time. I have always ...
pain in top spine
- By pebbles1962 · New reply 4:49 pm
- Journal · 1 reply
- I have over the last few days got sever pain in the big node thing at top of spine/neck normally it is large but it has gone flat. I hope it is not crumbling as my disk between 12/13 vertebrae has gone ...
Sarc/environmental study in 1995??
Has anyone been cellCept
- By jbackpain35 · New reply 2:54 pm
- Discussion in Treatment decisions · 3 replies
- Has anyone ever been on cellCept? My dr want to put me on cellCept not sure if its work. Can any one give me insite about this med. I have neurosarcoid, lung and skin ...
Accidental Activism?
- By cinnamonspirit · New reply 1:56 pm
- Discussion in Living with sarcoidosis · 2 replies
- I think one of my brothers and I may have educated Representative Ciro Rodriguez this past Saturday without even meaning to. We live in San Antonio, Texas. Rep. Rodriguez holds fairly regular open houses ...
Night Sweats
- By Margie74 · New reply 1:37 pm
- Discussion in Living with sarcoidosis · 6 replies
- I know that this topic had been covered many times over but do night sweats ever go away? Is having night sweats a permanent part of having Sarcoid or does it only show during flares? I have severe night ...
Disability Benefits and Sarcoidosis....anyone?
- By keifus · New reply 1:36 pm
- Discussion in Treatment decisions · 15 replies
- Hello Out There! I been dealing with Sar for bout 7 months now, a newbe really but I have filed for Social Security and in the finally stage but no answer yet. I was curious if anybody out there has got ...
Neuro Sarcoid? Anyone have that?
- By stitch68 · New reply 1:27 pm
- Discussion in Living with sarcoidosis · 12 replies
- Does anyone have that? Whats have you gone through or symptoms? I have to go for a brain MRI and I am scared I have this ...
MUSC sarcoidosis center, anybody went???
- By Charnellw · New reply 1:11 pm
- Discussion in Living with sarcoidosis · 16 replies
- I'm going to charleston on Feb. 5th and wanted to know if anyone has been there? I'm ready to go and get the help I feel i'm not getting here. So if anyone went I want to know how there experience went ...
Sinus Infection while on Immune Suppressants
- By JaynesInPain · New reply 12:55 pm
- Journal · 28 replies
- Well my doc confirmed my suspicion that I had sinus infection today & also fluid behind both ears. I am on 60mg Pred/daily, 15mg Methotrexate/wkly, & Remicade infusion/monthy (all serious immune compromisers ...
Nuero or Optical involvement?
Accupuncture
- By chosen1forlife · Posted 11:48 am
- Discussion in Living with sarcoidosis · 0 replies
- Hi, Im new to this site and was wondering if anyone has tried acupuncture? I have pulmonary Sarc. and a mass in my hilar region of lungs... currently only medication is pred. and acupuncture twice a week ...
Good Sarcoid Doctors near SW Missouri?
- By Caseydan · New reply 10:46 am
- Discussion in Treatment decisions · 1 reply
- I live in the SW corner of Missouri and I am hoping someone can recommend KNOWLEDGABLE sarcoid doctors near my area. I have a sarcoid disgnosis of the lungs, eyes, lymph nodes, skin, and spleen. My endo ...
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Help and information from FSR
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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The Stop Sarcoidosis Support Community connects patients, families, friends and caregivers for support and inspiration. The Stop Sarcoidosis Support Community is sponsored by the Foundation for Sarcoidosis Research in partnership with Inspire.