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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

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 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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    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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    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 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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    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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    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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    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 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 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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    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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    Related Experiences

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    debbie913 debbie913 31-35, F 1 Response 1 hr ago

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    Heyyy, just venting lbvs! I don't have any friends, nor family! is it by choice mmm yea in a way but not really! I tend to block people out and keep a tough guard! Why, because I...
    TewTewLove TewTewLove 26-30, F 7 mins ago

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    People have said I have an attractive smile before. I don't think so though. I've been told I "light up" with my smile. Which makes me want to gag. My teeth are very crooked. I...
    1lonelydaisy 1lonelydaisy 41-45 1 Response 14 hrs ago

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    Hey guys, I'm new here, so I'm not exactly sure how this goes.. But I figured I'd give it a shot. Here's a little bit about me: My name is Sara, I'm 19 years old, I live with my...
    darling1925 darling1925 18-21, F 1 Response 3 hrs ago

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    I don't trust men. I am afraid of them. I have never never been sexually abused. But I have had a psychologically abusive relationship with my dad for most of my life. I can't...
    mgkatie mgkatie 18-21, F 4 Responses 11 hrs ago

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    I want to share them all on here, but I don't have them organized in my head or anything like that.. And I'll have to work up to sharing bigger ones just because they're kind of...
    jessicadozen jessicadozen 18-21, F 2 Responses 9 hrs ago

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    I had my first tattoo done when I was 18 on my 18th birthday altho I don't "regret" it I wish I had out more thought into it! I walked in and said yeah that one right there the one...
    Fullofsunshine Fullofsunshine 26-30, F 2 Responses 4 hrs ago

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    The things I generally think about while driving. Because driving is Thinking Time. This morning on my way to the barn I was thinking about how meaning and words have no actual...
    disastercupcake disastercupcake 26-30, F 3 Responses 4 hrs ago

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    Okay, this dream was a normal dream but what we talked about was very interesting and I thought, huh. I don't remember where in the dream this was, I think it was before I used a...
    LoveUnite LoveUnite 26-30, F 9 hrs ago

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    I used to think that I wanted to be a fashion model because I loved the glitter and glamour that the fashion world has to offer. Now I've realized, all I ever wanted to be is a...
    abcdefghisabelmnopqrst abcdefghisabelmnopqrst 26-30, F 5 hrs ago

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    I know I have death anxiety. The problem is I'm only 15, and dying in about 70+ years makes me cry. The thing about death that I'm afraid of is, just not being concious or...
    MyPotentialThoughts MyPotentialThoughts 13-15, F 2 Responses 2 hrs ago

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    We all know someone who has passed away. Well, maybe you're fortunate to have not, but I guarantee you know someone who has. Death isn't all as bad as people make it out to be...
    HelloKardashiann HelloKardashiann 18-21, F 1 Response 1 hr ago

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    -Father. Sociopathic. Physically and mentally abusive to both my mother and myself. I lived with him for thirteen years. My current household: -Mother. I live with her now. Was...
    SilencesLullaby SilencesLullaby 16-17, F 15 hrs ago

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    I know I shouldn't, but I have a major crush on my boss. We talk all the time at work, and have started talking online till late most nights too. I know nothing will happen - he's...
    Toni47 Toni47 18-21, F 1 Response 14 hrs ago

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    I have made a big mistake , I wrongly used a word that was not at all appropriate . It may have caused hurt , if it did I am truly sorry. I hope you can forgive my poor choice of...
    heavenlyflower123 heavenlyflower123 36-40, F 14 hrs ago

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    My Best Friend was murdered on December 26, 2014... They still haven't convicted his killed.. He was the greatest person in my life... I still sleep in his shirt and have his...
    KatieBugg795 KatieBugg795 18-21, F 7 Responses 13 hrs ago

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    hey, X) been a while,, planning on deleting the account, maybe ditching it idk. i don't really realize what happened a while ago so don't ask. ..... :( ,,, enlightened one...
    iamnoor iamnoor 13-15, F 10 hrs ago

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    I am not only sexy, above average looking, and have a great looking hot body. I am super intelligent and use my brains accordingly. When in college I was a member of MENSA. I...
    momlovesoutdoors momlovesoutdoors 36-40, F 2 Responses 8 hrs ago

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    Hi, I'm a 21 year old medical student living abroad, I was diagnosed with bipolar nearly 3 years ago, and before that I struggled a lot. I let it get quite far before my family...
    lily449 lily449 18-21, F 1 Response 6 hrs ago

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    Hi, I'm a 21 year old medical student living abroad, I was diagnosed with bipolar nearly 3 years ago, and before that I struggled a lot. I let it get quite far before my family...
    lily449 lily449 18-21, F 1 Response 6 hrs ago

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    Hi, I'm a 21 year old medical student living abroad, I was diagnosed with bipolar nearly 3 years ago, and before that I struggled a lot. I let it get quite far before my family...
    lily449 lily449 18-21, F 6 hrs ago

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    Hi, I'm a 21 year old medical student living abroad, I was diagnosed with bipolar nearly 3 years ago, and before that I struggled a lot. I let it get quite far before my family...
    lily449 lily449 18-21, F 6 hrs ago

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    What happens with me is that I have to reread the page or a paragraph in order to acquire something like 80 % of information retained and processed in my brain. I don't know what...
    somniatorlupus somniatorlupus 18-21, M 4 hrs ago

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