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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. 55 People

    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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    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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    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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    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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    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 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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    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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    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 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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    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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    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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    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

    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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    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 Nov 6, 2013

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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 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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    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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    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

    To be completely honest, I denied it for some time. I haven't actually done any kind of official test, but I have a nurse practitioner and a number of knowledgeable individuals who...
    Kavka Kavka 18-21, M 16 hrs ago

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    I'm 31 years old and have been battling back problems for the last 15 years. It used to come on just once in awhile, a little pain in the lower back, some tingling down my right...
    jeneral3015 jeneral3015 31-35, F 12 hrs ago

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    I'm 16 years old.There are 10 days till my birthday.I've been depressed for good 3 years.My whole puberty was a great mess.One year and two months ago,I got bulimic.Before that,I...
    mystiquebelle mystiquebelle 13-15, F 9 hrs ago

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    HI , Im 24 years old , im a man . the thing about me is i am not quite sure if i have cauda Equina , i didnt have an accident or any truama , my pain first started at my right foot...
    Atrilundy Atrilundy 22-25, M 1 Response 12 hrs ago

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    *Walks up to counter* “Hi, I would like to order a man, athletic build, cute face- maybe with a little scuff on it;), very kind, charming, and intelligent; and that will be all...
    MW1321 MW1321 18-21, M 2 Responses 17 hrs ago

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    oh the battle with the body has been a living nightmare from hell as you all know so well. I have so many physical problems, I just get that look from the doctors. urggg So I have...
    mommaceitta mommaceitta 51-55, F 9 hrs ago

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    I have yet to see anyone about it or get an official diagnosis, but I think I have paranoid or disorganized schizophrenia. I have been experiencing auditory, visual, and even...
    e524 e524 18-21, F 1 Response 6 hrs ago

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    I really want to experience this since I never have before. I've never had a mutual bond with someone in which we feel strongly for each other. I am jealous of other people who...
    Dreamer32 Dreamer32 22-25, F 3 Responses 5 hrs ago

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    I'm new to EP.. I was told by my close friend that it was a great app that would help me deal with having herpes. Basically I was in a relationship with a guy for over a year...
    cb180696 cb180696 16-17, F 2 Responses 1 hr ago

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    #2 on my list of "Things I am proud of about me": 2. I’m not lazy/selfish/spoiled. I guess I’m not exactly sure what I would call this, but basically when I see people doing...
    shannonymous shannonymous 18-21, F 1 hr ago

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    If I had friends! 😫😭 I mean I have friends, socially, but nobody asks to hang out with me or asks me to join them on something, unless its my sister and her friends. Maybe...
    ashalew ashalew 22-25, F 14 hrs ago

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    I suffer awful anxiety attacks since 10 years every day. I also have social anxiety and have had panic attacks outside the house. I was on meds 10 years ago as it all started...
    angel8i angel8i 31-35, F 1 Response 14 hrs ago

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    I Have this collection of ribbons because use them when i have a haircut first week the hair sometimes dosen't look so good or because i must go for a haircut and didn't found time...
    blackweirdcat blackweirdcat 46-50, F 12 hrs ago

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    I'm a teacher who moved to a small town because I was supposed to get married. Didn't happen and now I have nothing and no one in my life. I have no one to call or talk to. I'm...
    srta srta 26-30, F 2 Responses 7 hrs ago

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    I am 13 and I have had pimples since 4th grade, and now I am in 7th grade and it has gotten so bad I don't want to go anywhere. But the worst part is I make it worse for myself...
    fabbeauty fabbeauty 18-21 6 hrs ago

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    I feel like I have no chance of being in a proper relationship... I had a girls night out with some friends last night which was fun, but I found myself feeling like the 'grenade...
    charllymarie charllymarie 18-21, F 4 Responses 5 hrs ago

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    Lots of things in mind these days. Lots of memories, that I didn't have on the surface. I have things to say that I'm not ready to say. I don't even think I'm ready to write them...
    WickedScullyOfTheWest WickedScullyOfTheWest 31-35, F 5 hrs ago

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    I don't understand why men are obsessed with their penis size and why the assume if they have a large penis, they suddenly know how to have sex. And then they have the gall to...
    ErraticallyGrey ErraticallyGrey 22-25, F 5 Responses 3 hrs ago

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    Another incident from when I was 14, one which is burned into my memory in excruciating detail. It happened a few weeks after my naked picture had made the rounds at school, and...
    reader123456789012 reader123456789012 22-25, F 1 Response 3 hrs ago

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    Hi there I have had ADHD for the last 30+ yrs and let me tell you I have had my ups and downs and things can get challenging at time I know I have found something that has worked...
    MrThriving MrThriving 36-40, M 3 hrs ago

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    I have very dark hair, dark eyelashes and eyebrows. I started to get the odd grey hair when I was 20. It seems to be a common thing for darker hair i guess. I have a guy friend who...
    SmashedUpSanity SmashedUpSanity 26-30, F 1 Response 43 mins ago

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    A lot of people (mainly guys) have said my voice is very soothing. I don't really agree but ehh.
    lexix0 lexix0 16-17, F 6 Responses 18 hrs ago

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    Last night I had a dream that felt good when I was having it but now I am awake I find it disturbing. I was with a crowd of people (in my mind, I seemed to associate them with...
    T4RD15 T4RD15 26-30 16 hrs ago

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    While at uni I was at a party and one of the lecturers was there. She was about 35 and I was 19, and we had a wonderful time at the party, and ended up kissing while we were...
    PinkyPinks PinkyPinks 31-35, F 5 Responses 11 hrs ago

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    "After A While" After a while you learn the subtle difference between holding a hand and chaining a soul and you learn love doesn't mean leaning and company doesn't always mean...
    mommaceitta mommaceitta 51-55, F 9 hrs ago

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    Just today... my mom called me an ungrateful egotist. It hurts a lot when your only purpose is to help others..and when you have helped. She is attacking me as if I was some kind...
    sparkydream sparkydream 16-17, F 1 Response 8 hrs ago

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    getting updates from my challengers.... i LIGHT UP when i read these: "I am half way done with 21 day fix. I am down about 5 pounds and about 25 pounds in 2 1/2 months. It feels...
    felismina felismina 36-40, F 1 Response 6 hrs ago

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    I am at the point in life where I have "disposable income" and I can buy nice stuff. I hate it when I walk into nice stores / specialty shops and I am ignored. I am looking for a...
    Kickingtires Kickingtires 51-55, M 1 Response 6 hrs ago

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    I carry it everywhere, spent 2 years of my life on it -.- made a lot of friends with this ipad so basically I have friends on my finger tips. If u Destroy my ipad, u destroy the...
    LoverBoyMike LoverBoyMike 18-21, M 5 hrs ago

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    I don't think he deserves a letter but I know that writing one will make me feel better so I'm doing this for me. I want to thank you for helping me get over him, but I also want...
    Dreamer32 Dreamer32 22-25, F 5 hrs ago

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    So my boyfriend and I have been together alittle over two years and hes leaving tomorrow for work. We are inseperable and he is my best friend. I have cried all day.knowing I will...
    stephyblueyes14 stephyblueyes14 26-30, F 3 hrs ago

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    All of the women of in my family have ESP. We've always had from the beginning. We all different forms of ESP. But is it strange that every female in my moms side of the family...
    SimplyZero SimplyZero 13-15, F 1 Response 2 hrs ago

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    The thing that makes me most angry about people who constantly lie to you, is the fact they think you are not smart enough to figure out they are lying. When you have, they persist...
    JustmeraeAgain JustmeraeAgain 46-50, F 3 Responses 2 hrs ago

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    I have no one but me. I immerse myself in books, crafts and games to drown out the fact that I am totally alone. Granted, I do love being alone, but it would be nice to know...
    CraftsInStitches CraftsInStitches 31-35, F 3 Responses 48 mins ago