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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. 58 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 41-45, 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

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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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    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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    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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    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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    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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    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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    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 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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    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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    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

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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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    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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    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 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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    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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    Related Experiences

    I am a extremely secret person so I think I enjoy this site most of all because I have a place I can let things off my chest yet still be anonymous to some degree. Anyways; with...
    Chicgeekgal Chicgeekgal 22-25, F 1 Response 2 hrs ago

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    I don't know how I let this happen and my heart wants to be hopeful but reality just doesn't make it seem likely! We live half a world apart and every opposite in our social...
    starstuff79 starstuff79 31-35, F 2 Responses 7 hrs ago

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    I have red hair. I've been told I look like a leprechaun but that was the day after I kicked my elementary school bully's *** at Walmart... It was thru text messaging also lol...
    Mechawaffle Mechawaffle 13-15, M 1 Response 7 hrs ago

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    Projectgwyn101 is so fuking sexy please have me or I'll have you.
    hate4life hate4life 16-17, M 1 Response 5 hrs ago

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    Well, its my wifes family. They're ok , just, I have NOTHING in common with them. Whenever there is a get-together I feel SO out of place. One sis-in-law and her husband are very...
    boxersoff4u boxersoff4u 51-55, M 4 hrs ago

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    I'm part Greek and Italian, so genetically I have a god tier big nose. A lot of people, both men and women, are often embarrassed or at least self concious about their big noses...
    LisaBella88 LisaBella88 18-21, F 1 Response 4 hrs ago

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    I have a Diploma in Viticulture and Wine Production. I spent two years at TAFE college learning how to grow and process grapes to be crushed and turned into wine I have done three...
    candywhite26 candywhite26 56-60, M 1 Response 56 mins ago

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    I lost my Dad 2012 and I have recently lost my Mom on June 7 it's been a little over a month and I am just now starting to feel depressed. They both passed from cancer and I don't...
    toripiercy toripiercy 13-15, F 1 Response 7 hrs ago

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    Okay so I'm not sure If I did but there wasn't a right experience for my case! I have sprained the same foot 3 times before today! So today I was on a rope swing and I tried to...
    pinklover76 pinklover76 16-17, F 1 Response 7 hrs ago

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    Just got home from work, want to sleep but have insomnia. This sucks!
    bananarama1 bananarama1 41-45, F 1 Response 6 hrs ago

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    I have scars! Plural. Several .... and all from my breast cancer. One is from my port and two are on my breasts from my mastectomies. But they are beautiful because they are...
    lagatta lagatta 41-45, F 3 Responses 5 hrs ago

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    I know it's not a big deal or anything but I haven't had my first kiss but I'm scared of actually kissing someone. Is that normal or am I being paranoid ?
    Smiles1997 Smiles1997 16-17, F 3 Responses 4 hrs ago

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    Whoever claims this is guilty of paving the way for pedophiles. Of course love has an age. Of course there is no true love without some maturity. This group is promoting a lie and...
    Soniador1963 Soniador1963 46-50, M 4 hrs ago

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    I have a blog about my life and everything I've lived through. It is dark but I am a survivor and proud of the lady I am today http://chanellehaffenden.wordpress.com
    Kissedbyarose Kissedbyarose 22-25, F 3 hrs ago

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    But I can never have to many panties.. I'm a sucker for a pretty panty
    kysatinman kysatinman 41-45, T 3 Responses 3 hrs ago

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    Do any of you have animal alters? -Shar
    TheDylanWorld TheDylanWorld 13-15, M 2 hrs ago

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    A series of incidents have let me to leave from EP. In a matter of hours I felt depressed didn t know exactly what was i thinking about , like fell in an illusion. I left and...
    prince35xxx prince35xxx 31-35, M 1 Response 1 hr ago

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    I have a big butt and big breasts. Add me and message me. 42H is my size and they are growing a little bigger.
    Anataylor22 Anataylor22 22-25, F 1 Response 1 hr ago

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    I have many friends online but not even a single one in real. People always made fun of me from my Childhood to present, so i don't believe in anyone anymore and i don't wanna be...
    mahdiraza mahdiraza 16-17, M 2 Responses 1 hr ago

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    Do any of you have animal alters?? -Shar :)
    TheDylanWorld TheDylanWorld 13-15, M 1 Response 56 mins ago

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    My neighbor has a newly "acquired" habit ( considering he doesn't have facebook nor messenger) repeats EVERYTHING i type to my friends and family online or when i turn airplane...
    whitezombie1986 whitezombie1986 26-30, M 1 Response 46 mins ago

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    I have not had sex and don't know a lot about it
    kimbooty1313 kimbooty1313 13-15, F 30 mins ago

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    Crossed the finish line of a marathon last week and within 10 mins I was in an ambulance. Hives, throat closed up, tongue swollen, eyes and hands swollen...I was surprised to say...
    MPLS1973 MPLS1973 41-45, F Jun 28

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    I have been having sex with my daughters mum for years. I think it's time to stop.
    usernamesareashame usernamesareashame 46-50, M 1 Response Jun 28

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    Well it has been about 17 years for me and the agony of this is sometimes just too much. I have resisted any medication but now I take as needed 2 mg daily (usually .5 - 1mg at a...
    njfeds njfeds 51-55 Jun 28

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    Once upon a time my social anxiety was so bad that I couldn't ask the time, couldn't order a pizza... I still have a little problem making phone calls... I had panic attacks at...
    Drechavo Drechavo 26-30, F 2 Responses Jun 28

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    I have a genetic form of thyroid cancer. My chances of living past 60 increase once I do some stupid surgery.
    kat990 kat990 13-15 2 Responses Jun 28

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    I can't do this. I can't let anyone get close to me. Lately, I've met some people. People I really connect with. People who are excited to talk with me, hang out with me. And I...
    AlleywayGospel AlleywayGospel 26-30, F 2 Responses Jun 28

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    I have had a grand total of 13 concussions. I believe it has taken a toll on me. Mostly in the form of terrible headaches. Also, I'm not sure if it's related, some muscle twitches...
    AlleywayGospel AlleywayGospel 26-30, F 1 Response Jun 28

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