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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. 63 People

    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 46-50, F May 19, 2013

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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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    I feel alone and unloved!

    I have begged for my husband to be here for me and he has better things to do! My mom took me to the emergency room yesterday for chest pains that were terrible. Told me it wasn't my heart but maybe my sarcoidosis!
    UrBabeSecret UrBabeSecret 31-35, F 3 Responses May 2

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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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    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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    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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    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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    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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    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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    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, 2014

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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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    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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    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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    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

    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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    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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    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 1 Response Apr 22, 2013

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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, 2014

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    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 9 Responses Sep 2, 2011

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    UrBabeSecret UrBabeSecret 31-35, F May 4

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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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    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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    Related Experiences

    First of all, please don't judge..I am a good person that did a not-so-good-thing. I fell deeply in love with someone I shouldn't have. He feels the same. We are both with other...
    Catontheroof Catontheroof 31-35, F 1 Response 8 hrs ago

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    My cup is overflowing with inspiration. I said it then, I say it once again; I love my special friend. I feel I have more than my EP share! (I couldn't upload the cover pic in the...
    stiltcourt stiltcourt 41-45, F 1 Response 6 hrs ago

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    I have been diagnosed with type one and two cervical dysphasia. Since 35% of cases heal on their own I am going to wait and get another copo in 6 months before having the LEEP...
    jackiesmith12 jackiesmith12 22-25, F 5 hrs ago

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    Even before Kindergarten, I have struggled with a social anxiety disorder known as Selective Mutism. Up until Middle School I never spoke a word to anyone except my family, and...
    girlwithsm girlwithsm 13-15, F 4 hrs ago

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    Yup....and that is because I no longer have the strength, the resilience or the optimism to withstand any more anxiety. I have a dream which means the world to me but what makes me...
    uiop09 uiop09 18-21, F 2 hrs ago

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    June 3 2015. Things have changed for the better since I was in here writing before The chronic fatigue syndrome isn't any better but I'm working some every week. I feel better...
    MsBlueDreamer MsBlueDreamer 46-50, F 1 Response 2 hrs ago

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      My name is Jaydie and I am 15 years old. A few months ago, I was diagnosed with depersonalisation/derealisation, which causes symptoms such as feeling unreal, not alive...
    Jaydkins Jaydkins 13-15, F 2 Responses 2 hrs ago

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    I wonder if there are any others that can relate to my issue. I have traveled to and lived in other countries over the years. I was stationed in Germany for a couple of years...
    LostDragon LostDragon 56-60, M 1 hr ago

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    Why do I Always become EXTREMELY sexually attracted to the friends of my husband?? My husband has forbidden this one to me for 10 years ( I have had.a few of his friends, like in...
    curiouslylooking4me curiouslylooking4me 31-35, F 1 Response 10 hrs ago

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    idk why allmost everyone I know is on kikster and it's like why text on a phone when I got my comp and I can press the keys on a keyboard alot better than on my phone. I don't like...
    foxy4ever foxy4ever 13-15, M 2 Responses 7 hrs ago

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    so lesson learned sufficiently...went to the beach Saturday with a bunch of friends. at first, when we got to the beach it was cool, and there was a heavy fog, which actually...
    bcharap bcharap 36-40, M 2 hrs ago

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    My scars remind me that I survived... I survived a horrible dark time in my life, and I don't have to be ashamed of that. Each one of those marks was another hour, another day...
    Tori84 Tori84 26-30, F 1 Response 10 hrs ago

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    I would have married a woman after only knowing her 3 months. I knew I wanted to marry her within 2 weeks. Gladly, I would have loved her forever and laid down in traffic for her...
    Ajushi Ajushi 41-45, M 1 Response 9 hrs ago

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    This was about a life altering heartbreak. Someone I care & love very deeply for, which in turn helped me discover what I am about. Please, leave your thoughts. ❤True love is...
    Stickwithmebaby Stickwithmebaby 36-40, F 9 hrs ago

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    Religion based families dont mix such as Catholic and maybe Jewish. I even see asian guys and other ethnicities finally starting to mix these days. Korean and Japanese families...
    BoxJellyFish64 BoxJellyFish64 22-25 1 Response 9 hrs ago

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    I met a nice girl that wanted me to show on webcam. After I started my cam I liked to see her take off the clothes and let her watch me ***** too. Till then I have showed my self...
    Ruefe87 Ruefe87 26-30, M 9 hrs ago

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    I have had anxiety for my whole life. It's frustrating because sometimes I can't sleep which is even more frustrating because I have 2 kids. 2yr and 6 months. The other day my mom...
    xiluvspink xiluvspink 22-25, F 1 Response 7 hrs ago

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    Hey guys, just wondering if anyone had/have problems with creativity, having this disorder? Mine was off, on for a few months than now fading a bit. For ex/ my creativity... I've...
    SsMcGavin SsMcGavin 22-25, M 6 hrs ago

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    He threatened to end my life just because of things I have believed in, and he said "if you believe in such cause, why don't you believe my words on killing you?" And I simply...
    Gino19 Gino19 16-17, M 2 hrs ago

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    I have recently come to terms that I like a certain guy, we were really close last year but now not so much due to not having classes together. I really miss him and I'm now...
    Bethhhhhh Bethhhhhh 18-21, F 1 hr ago

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    I own and restored a 68 coupe I owned this car since 1994.The one thin i have noticed is there is no love for the coupe.i have found stuff (shirts,model kits, die cast, posters...
    Jazonx Jazonx 36-40 57 mins ago

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    He's the last guy I expected to have a crush on because he is so indifferent. I think I like indifferent guys. -_- I shouldn't because I am taken. He's a 200 lb guy and slightly a...
    BoxJellyFish64 BoxJellyFish64 22-25 1 Response 10 hrs ago