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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. 61 People

    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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    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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    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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    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 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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    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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    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!
    deleted deleted 26-30 4 Responses May 2

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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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    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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    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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    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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    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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    I was diagnosed in 1998.

    I was extremely fatigue & no one knew why. I had a flight surgeon diagnose me with high calcium & immediately called me to the ER. I didn't realize how important it was. They were shocked I wasn't in a coma. @that time they used me as a case study @fort Gordon. @that time...
    deleted deleted 26-30 Aug 7

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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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    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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    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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    deleted deleted 26-30 May 4

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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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    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 1 Response May 10, 2014

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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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    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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    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 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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    Related Experiences

    I miss writing and updating my blog. Just, I can't mix my studies with it so too busy, but surely I'll get back to it at break. There's just too many things on my mind that I wanna...
    Jaisz Jaisz 22-25, F 19 mins ago

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    i have been to Africa mexico Nicaragua and Australia
    Sheslikethewind Sheslikethewind 16-17, F 2 Responses 20 mins ago

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    Assuming that you have read the title, I hope you can relate to what I'm trying to say. One side, is for the public. When Im outside my house, and when other people are there, I...
    ChrisFerguson ChrisFerguson 16-17, M 1 hr ago

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    I'm 15, I live in the UK and I was looking for someone to talk to. Not necessarily to vent problems to, just someone I can truly be my self around. It's hard because none of my...
    ellielouise25 ellielouise25 13-15, F 1 hr ago

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    Want to know something truly tragic? In my work I have a two close female friends I can trust 100% with anything I tell them, one of them I feel I cannot trust them with this, not...
    RaiseYourWhat RaiseYourWhat 26-30, F 1 hr ago

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    I can't wait to get my certification so I can start wearing my scrubs and working at a hospital. Retail is sooo stressful and annoying. People treat you like your a servant. Like...
    Overtherainbow66 Overtherainbow66 22-25, F 2 hrs ago

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    I starred a movie just recently. I am the red one in "Inside Out". Really, i become angry too fast. i upset about small things and nowadays every single thing can easily makes me...
    cactieandporcupine cactieandporcupine 26-30, F 2 hrs ago

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    I wish you were here! I have no idea who you are but I wish you were here:)
    ffedupp ffedupp 36-40, F 2 Responses 2 hrs ago

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    I have a crush on hoxton from payday
    FromAPoorDesign FromAPoorDesign 16-17, F 1 Response 2 hrs ago

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    any females who have social anxiety or whatever?
    exliontamer exliontamer 22-25, F 2 Responses 3 hrs ago

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    The minute I decide to eat right no matter what happens seems to be the minute the universe decides to throw me a heap of food related challenges. Last weekend it was my friend's...
    Robinzasio Robinzasio 41-45, F 3 hrs ago

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    That's Vendetta behind me. He follows me everywhere so I have to sneak away from his butt lol
    KingOfOral603 KingOfOral603 36-40, M 4 hrs ago

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    I have two Siamese cats. That's Vendetta behind me and his momma, Kana( I didn't name her lol), is laying on my chest. They especially Kana. I had a 3rd, Joey, Vendetta's pops...
    KingOfOral603 KingOfOral603 36-40, M 1 Response 4 hrs ago

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    never the same #865: have you ever seen dirty pics of your friend who you interact on a daily basis? it's hard to unseen that...especially when you have to act like "you saw...
    jbm1984 jbm1984 31-35, F 6 Responses 5 hrs ago

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    There were signs, I guess, when I was a toddler. But it started in earnest when I was in kindergarten. I had unbearable itching on my eyelashes, somehow pulling them out provided...
    ridinginthewind ridinginthewind 22-25, F 5 hrs ago

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    a world alone by lorde. i heard it the other day on pandora radio. all i have is: "the people are talking, the people are talking" with her humming in my brain over and over...
    cosmosdrift cosmosdrift 31-35, F 6 hrs ago

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    sometimes i have a particular corner time... I must sit on a doormat of hard plastic with my red buttocks!
    laurettalauretta laurettalauretta 41-45, F 2 Responses 6 hrs ago

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    Tears have no weight but it carries heavy feelings :(
    ItsMeAriana ItsMeAriana 18-21, F 2 Responses 7 hrs ago

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    My girlfriend was 17 and three months pregnant when we met. The father bailed out as soon as he found out she was carrying twins. I fell for her before she started showing and...
    anaz4 anaz4 18-21 2 Responses 8 hrs ago

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    I don't trust anyone with my feelings. I trust that people try to do the right thing and I can trust people to be kind and honest. But I just can not for the life of me open up to...
    Zbeara Zbeara 22-25, M 3 Responses 9 hrs ago

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