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I Have Sarcoidosis

A Sarcoidosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Sarcoidosis. You're not alone. 58 People

    I Have End Stage Sarcoidosis

    Hi, everyone well I would like to share my story with you guys. I was diagnose with sarcoidosis in 1992 while I was in the military. I started noticing shortness of breathe after working out; I couldn't understand why because I was in shape. So, I went to the doctor numerous of...
    ShellieCook ShellieCook 36-40 10 Responses Sep 2, 2011

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    My Journey So Far

    I've had sarcoidosis for 5yrs . I have Sarc in my lungs with involvement in my eyes , heart , joints and muscles and fatigued . Right now the joint pain is killing me . I'm on predisone , MTX , folic acid , aspirin and toporol . Lately I've been thinking about coming off of work...
    Sunshine1728 Sunshine1728 46-50, F 1 Response Jan 25, 2013

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    Lived With This For 13+ Yrs Now...

    I was diagnosed with Pulmonary Sarc in the beginning of Jan of 99. Since then I've been diagnosed with Nuero-Sarc- as well as VasoVagal Syndrome too. The high doses of Prednisone has left me with some serious joint & bone issues as well as pushed my sugars thru the roof & because...
    ginaf333 ginaf333 46-50, F Apr 22, 2013

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    I was diagnosed in 2003.

    Diagnosed by mediastinal biopsy and treated with high dose prednisone for a year. I was pronounced in remission in 2004. I am still in remission and have a yearly visit with my Sarcoidosis MD.
    Garyhealer Garyhealer 66-70, M Apr 8

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    Is It Sarcoidosis?

    I have Sjogren's syndrome. For years I have suffered from achy joints and fatigue. Referred to a Rheumatologist who dx's me. Now dryness issues. I was on Plaquenil for over a yr but felt it wasn't doing any good.My fatigue and joint problems grew worse so I discontinued the...
    cat1962 cat1962 46-50, F 3 Responses Jan 23, 2013

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    I Have Sarcoidosis And I Hate It!

    Back in December of 2011 I had a pneumonia vaccination and one week later contracted pneumonia. Urgent care diagnosed the pneumonia and sent me to a pulmonologist for a followup. He said he "saw" something on the x-ray he wanted to check out. Then followed breathing tests, CAT...
    checkers3 checkers3 61-65 1 Response Sep 12, 2012

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    Misdiagnosed a lifetime

    Thought to have asthma from birth; it either progressed to sarcoidosis or was sarcoidosis all along? I had very few problem as teenager but that would change. Sometime in mid 1980s everything changed (25years old or so). Married with 6 children my activities became more and more...
    Ocrigger Ocrigger 51-55, M 1 Response Jun 14, 2012

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    Why Me?why This?

    Why me?Why this? SARCOIDOSIS is an inflammatory disease characterized by the presence of NONCASEATING GRANULOMAS (collections of inflammatory cells/lumps that do not pus)that form SMALL LUMPS in multiple organs.Most often in the lungs and lymph nodes.Sarcoidosis is an AUTOIMMUNE...
    LibertyBell LibertyBell 36-40, F 5 Responses Feb 24, 2009

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    Sarcoidosis was first mentioned to me in 2005;

    I saw specialists, jumped through the hoops, and results were inconclusive, so I did not get an "official" diagnosis, but I was told it was "likely". As I researched, my family and I became convinced that I have sarcoidosis. I could basically check off every box on a list of...
    Musicandbooks Musicandbooks 41-45, F May 10

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    Looking For Other People With Sarcoid

    I have Sarcoidosis. I was diagnosed two years ago and progressively am getting worse. I feel very alone and feel like no one understands. I continue my life suffering in silence and pretending like everything is okay and  nothing has changed. Inside I am fighting and scared...
    mumtozach mumtozach 36-40, F 6 Responses Sep 26, 2009

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    Frustrated And Scared

    In 2001, I went to my doctor with complaints of back pains,she prescribed muscle relaxers,assuming back sprain,which in truth were my lungs hurting, i found out i had sarcoidosis Oct 3rd.2003.... one night i was ok then all of a sudden every time i inhaled it hurted,really bad...
    havona havona 41-45, F May 19, 2013

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    I Need Help

    Hello I'm a 43 year old African American woman who was diagnosed with Lung Sarcoidosis in October of 2012. I wasn't having any lung problems when they diagnosed me. I was having alot of hand issues. My hands were very achy, cold and tingly. This issue went on for at least 2 years...
    Kimberly31 Kimberly31 41-45 1 Response Nov 6, 2013

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    Sarcoid 14 Yrs.

    I've had sarcoid for 14 yrs. been on prednisone, & other meds, but now I have been on methrotrexate for over 5 yrs.& it seems to be working  pretty well. Better then prednisone which I will not go back on...hated that!. But still have a lot of the systems like fatigue, always...
    Gemini36 Gemini36 41-45 2 Responses Feb 7, 2011

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    Sarcoidosis

    http://afternopalea.byethost12.com/after/ Please take a look at the before and after pics of my friend Kris who suffers from sarcoidosis on the above link! Amazing!!! She has tried everything...antibiotics, laser treatments, autoimmune meds, etc... She has also been going to mayo...
    zepp24 zepp24 36-40 Sep 22, 2010

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    Not Sure

    Last November I started feeling a lump on the lower part of my spine.  I couldn't feel it with my fingers only felt something when I leaned back.  It didn't stop so in March I went to the Dr.  He took an X-ray but didn't see anything.  In August I went to the...
    loudub loudub 51-55, F 5 Responses Oct 4, 2009

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    Sarcoidosis Since 1989

    I was seeing a doctor for a year or more said I had Lupus gave me antiflammatory drugs all different kinds nothing worked. One night I crippled up every joint inflamed went to the ER and later found out I had possible Hodgkins Lyploma or Sarcoidosis. I never did the biopsy my...
    mymollysue mymollysue 56-60, F 2 Responses Jul 3, 2013

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    Brand New Diagnosis

    I have been exhausted for as long as I can recall. After being told I was overweight, anemic, narcoleptic, and that I have reactive mono, I discovered masses in my neck. Was told it was probably lymphoma, luckily a needle biopsy was negative for cancer. I had a massively inflamed...
    onebeautifuldisaster onebeautifuldisaster 31-35, F 1 Response Jun 28, 2012

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    My Sarcoid

    I have been battling this disease since 1987 and it has not been easy, taking all kinds of meds to make me feel better. Having good days and bad struggling to get through the day. Have lungs and skin sarc and some in the bones in my fingers.
    Hamp57 Hamp57 51-55, F 2 Responses Nov 6, 2012

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    How I Get Rid Of Sarcoid

    Click here-http://8ac4d7w1qcjg7ka7s8b7tu2722.hop.clickbank.net/?tid=AFILAFIL63
    bratosi bratosi 41-45, F 1 Response Jul 9, 2011

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    I Have Eventually Been Diagnosed With Sarcoidosis!

    Last October 2010 I felt really under the weather and the bones in my feet and legs were really painful. I coach sport and suddenly I was iunable to run or walk without a stick or great pain. Anyway I went to the doctors and they said you have a fungal infection in your feet and...
    cosmicpete cosmicpete 46-50, M 7 Responses Jan 3, 2011

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    Related Experiences

    My symptoms started when I was 16. I began to experience widespread joint, muscle pain, and headaches. I was seen by multiple doctors who said that I was perfectly fine and just...
    eeeck eeeck 26-30 Jul 21

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    I had a brother, who was my father, who was my uncle. He was murdered. Slaughtered even, his corpse looted & desecrated to this day. I'm sure you've heard of him. How can the...
    zinnyy zinnyy 22-25, M Jul 21

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    Hello. I was diagnosed with A.D. 5 years ago, and 5 years before that I was diagnosed with Type 1 Diabetes. I am currently 20 weeks pregnant (and it has been terrible thus far!) I...
    jenyeaz jenyeaz 22-25, F Jul 21

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    Is this normal? Does anyone else have this?
    Shizuka000 Shizuka000 13-15, F 3 Responses Jul 21

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    Last night I dreamt of an alien invasion. Lots of bright yellow spherical UFOs. My feelings in the dream were very intense. I have had dreams before where I woke up next to my now...
    tlee5001 tlee5001 22-25, F 2 Responses Jul 21

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    We were so in love, but we agreed the timing wasn't right and the distance would be difficult. We still stay in touch. He said he's dating someone now, but he also gave me reason...
    SacredEarth SacredEarth 18-21, F 3 Responses Jul 21

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    My boyfriend's half brother is 24. I'm 15. I have a crush on him. Like, a major crush. Ugh. I wish he would notice me when my boyfriend doesn't.
    stillYDGN stillYDGN 13-15, F 1 Response Jul 21

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    I was born with two spirit animals who are always by my side, from what I know its not normal for someone to have two spirit animals. I am able to find other people's spirit...
    ziroks ziroks 22-25, M 3 Responses Jul 21

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    What if everywhere was like... Canada. What if hurler finished the job. Can you imagine how many things would not have happened??? 9/11. Afghanistan, operation enduring Freedom...
    JaysGrief JaysGrief 16-17, M Jul 21

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    Do you ever wonder what it would be like to be able to go back in time and change how you reacted to something or someone? I sometimes do and tend to relive the moments and the...
    LivefortheWeekend LivefortheWeekend 46-50, M 2 Responses Jul 21

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    Sometimes I just wanna forget all and be again the hard rock careless for emotions but only fun.Please myself and make my will,be in control,have the power.I suposse I should be...
    4biandu 4biandu 26-30, F Jul 21

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    I'm am not typing this again so you'll have to read all my photos
    tlee5001 tlee5001 22-25, F Jul 21

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    When I was little (maybe 7) I use to have this reacquiring dream that I was running from zombies in a an lds church. (I was raised lds) I have done research on the meaning and it...
    tlee5001 tlee5001 22-25, F 1 Response Jul 21

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    I notice that when someone is online they rarely ask directly or as its known beat around the bush to get around to a question they actually want to ask.. why is this ? Perhaps...
    GinIyoku GinIyoku 26-30 Jul 21

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    Since we don't know you skumbag...your considered an official stalker. ..don't be too sure what I can do...your just a desperate brick. You have to play a brick to catch a brick
    Debjusnotes50 Debjusnotes50 46-50, F 1 Response Jul 21

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    I don't believe that it is the end of the world, or even that it is near to being the end of the world. However, the past few nights I have had dreams concerning big world events...
    PurpleGlassPalace PurpleGlassPalace 26-30 Jul 21

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    When i was a child my mother was so overprotective and never ever treat me with respect, she never allows me to decorate my own room the way i like and always throw away my...
    thesimpletruth77 thesimpletruth77 36-40, F 1 Response Jul 21

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    Last night, i dreamt i was on the Fifa World Cup between Netherlands and France. France won but they were withdrawn the trophy and didn't won because they were filming all the time...
    MintPanda MintPanda 13-15, M Jul 21

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    What does the quote 'take the road less traveled' mean to you ? What do you suppose the underlying implications are for your life? What's the application for your own life and...
    AquariusLife AquariusLife 26-30, F 3 Responses Jul 21

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    I'm starting to think several of my alters have integrated, but I have no idea how to know. It's like I know it is them based on how it felt when I was co-conscious with them, but...
    BrokenOneX BrokenOneX 31-35 1 Response Jul 21

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    I have a snapchat :Kinthicupcake if you like funny stuff blogs or just to talk add me
    IjUstDoNtCare12 IjUstDoNtCare12 13-15, F Jul 21

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    I love a her and she loves me too But i can't have her because she already have a boyfriend. And she's scared that our friendship might be ruin if we follow our feelings
    Harukami Harukami 16-17, F Jul 21

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    All the times I appear alone. ..we have to do that in order to get debra...she's another skumbag like you She was cammed in all day when Ann Marie was here saturday... Who's the...
    gether5050 gether5050 46-50, F Jul 21

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    I personally believe a woman's purpose is to have babies, if possible. Also, I believe the purpose of a woman is to have sex with her husband for fun and games.
    vickianderson69 vickianderson69 41-45, F 3 Responses Jul 21

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    I have a family bed with my infant twin sons. This is great for breastfeeding, playing, sleeping, and bonding together. I believe in families having a family bed. This is best...
    vickianderson69 vickianderson69 41-45, F 10 Responses Jul 21

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    When I was on acid, I've never laughed so hard in my life. I have depression and a little anxiety. To avoid having a bad trip, I got in a super positive mindset before the trip...
    hunterrrama hunterrrama 22-25, M 2 Responses Jul 21

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    Iv got 9 tattoos and I find there like an addiction the more I have the more I want I think I might have to stop after my next one lol
    justme414 justme414 22-25, M 1 Response Jul 21

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    I really want to do urban exploring, like in abandoned buildings and ghost towns. I've always loved to do stuff like that, and I've been finding pictures online of abandoned malls...
    Env06 Env06 22-25, F 1 Response Jul 21

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    We are simply not interested in researching and becoming knowledgeable of anything. We expect it all to be done for us,I'm talking about everything from our own personal health...
    tom67890 tom67890 46-50, M 1 Response Jul 21

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