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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. 60 People

    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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    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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    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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    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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    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 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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    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 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 8 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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    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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    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 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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    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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    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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    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 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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    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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    Related Experiences

    **stupid rant incoming** Every day, I start to think more and more about how stupid and ignorant my grandfather is. He picks the most STUPID fights with me, and never believes...
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses 13 hrs ago

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    This is from a woman who is a life coach (or something like that - I'm not sure exactly what she chooses as her title.) I'm on her mailing list, and she also posts on Facebook...
    SmartKat SmartKat 46-50, F 7 Responses 14 hrs ago

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    Hi everyone.... last Monday I had to go to hospital because I was burning up with fever and I had these awful painful lumps on my private parts. I had had aches and pains all over...
    completelygutted completelygutted 36-40, F 1 Response 6 hrs ago

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    Any other daughters of narcs have this? My mother never asks how I am or cares about I feel. Talk about my problems, she doesn't listen and switches it to be about her (common...
    1lonelydaisy 1lonelydaisy 41-45 1 hr ago

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    What I would really like today is to have a good hard cry on someone's shoulder, with their arms wrapped around me and a soothing voice telling me it's ok. But I don't have anyone...
    Littlemissshy7 Littlemissshy7 41-45, F 1 Response 15 hrs ago

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    I have the greatest friend anyone could ever have. Her name is Georgia and she lives about 600 miles away from me. Even though she lives this far she still manages to make me laugh...
    HMC17 HMC17 13-15, M 13 hrs ago

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    Lately I have had trouble falling asleep because of nightmares. When I say nightmares you must understand that I am not talking about the bogeyman in the closet - which I would...
    TerryArmstrong TerryArmstrong 22-25, M 1 Response 9 hrs ago

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    I have a crush on a guy that loves God, a teenage young man who depends on Him for salvation. He is, of course, a good guy. He is very respectful, and someone you don't always find...
    MzzHarryStyles MzzHarryStyles 16-17, F 3 hrs ago

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    I don't have a heart. But I have an oval. I feel like it makes my face look chubby, and it doesn't help considering I already have a little weight on me. I wish I had a pretty slim...
    kkam420 kkam420 13-15, F 1 Response 2 hrs ago

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    I fear the future we bequeath to our children as a legacy. So many things are wrong in this delusional society we live in. So much ignorance and judgement. It seems like some...
    kimmychantwo kimmychantwo 41-45, F 1 Response 2 hrs ago

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    It's more like anxiety of attention or being around crowds. I just can't handle it. I do enjoy people but in small groups of maybe three or four. But I have had this for a good...
    TheCutestDragon TheCutestDragon 18-21, F 1 hr ago

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    I became very depressed over three years ago when my face was scarred and burned. Today I'm still in disbelief of how bad it is and feel very suicidal. There are no treatments to...
    Imoveryou Imoveryou 26-30, F 1 hr ago

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    it's not my fault that I have trust issues. I can't have faith in people when they let me down time after time. if you can't understand that then why are you still here? it's not...
    KitCatBar14 KitCatBar14 18-21, F 2 Responses 1 hr ago

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    I am beginning to hate it. I like to have fun and make other people optimistic but I would also like to be taken serious when I show my darker side. I don't want to have to smile...
    ForTheFallen ForTheFallen 22-25, M 22 hrs ago

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    ok so I have tripaphobia. omg I almost can't deal. its horrible. it just triggered by the plant this summer. now it won't go away. its everywhere, foods, and ordinary stuff. I take...
    snowhite69 snowhite69 36-40, F 22 hrs ago

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    I can never present to save my life. my teachers know that I get too nervous and scared to present anything in front of the class but they continue to do so and everytime I do I...
    ss18 ss18 13-15, F 2 Responses 19 hrs ago

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    If you find somebody that actually cares about your problems or cares about you in general , never let them go . It's a cold world and most people you meet will only care for a...
    ThePrettyOnee ThePrettyOnee 13-15, F 10 hrs ago

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    I carry hand sanitizer on my Keychain. I use the flavor ones that have a smell to it.
    lorrena19 lorrena19 18-21, F 10 hrs ago

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    I'm not sure if there is a marquee sign above my head that says I have all the answers but I'm pretty confident that I do not. I have a hard enough time finding the answers to MY...
    pollyprozac pollyprozac 41-45, F 9 hrs ago

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    First of all, I'm in such a great mood! You know those memories that are really robust! And sometimes you catch a scent,or you look at a photo, and you just remember everything...
    StokesQuirky StokesQuirky 18-21, F 8 hrs ago

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    In this case, *than my boyfriends*. Because I'm poly and I have two of them. (Before you jump on me, both of them know about one another.) But I have lately developed feelings for...
    standingfirm standingfirm 26-30, F 8 hrs ago

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    I've dealt with panic attacks for most of my life, and I know I handle them pretty well. Most people have no idea when I'm having one, but it does stop me from doing things I want...
    IwillAlwaysBeMe IwillAlwaysBeMe 18-21, F 6 hrs ago

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    Best of most of the pics I have
    CosplayPotato CosplayPotato 13-15, F 2 Responses 4 hrs ago

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    I have been diagnosed 1 week ago. Now I have 4 small lesions, last year I had 10 lesions that healed espontaniously. I'm a 37 years old doctor and this condition leaves me very...
    lctpereira lctpereira 36-40, M 1 Response 4 hrs ago

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    A friend of mine died last May. When he died no one would say what happened to him. His family was very secretive and wouldn't allow anyone but relatives at his viewing or funeral...
    kayroxyoursox kayroxyoursox 26-30, F 1 hr ago

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    I have them as long as I remember myself, there is no logic or rhythm to it. My biological clock is not set to any default.
    axon1001 axon1001 41-45, M 22 hrs ago

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    hi there I'm a crossdresser and have a very vivid imagination and I'd like to make a story in a way me and u now in this story I must be dressed as a girl for parts and made to...
    StarcraftsSwarm StarcraftsSwarm 13-15, T 22 hrs ago

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    "Have some humble pie“ The reality of the energetic world: "I was sitting in the classroom in meditation school…practicing clairvoyant training. When we were finished, we...
    Injoy1767 Injoy1767 46-50, F 21 hrs ago