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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. 64 People

    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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    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 1 Response Apr 8, 2014

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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, 2015

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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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    deleted deleted 26-30 1 Response May 4, 2015

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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 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, 2015

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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 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 2 Responses Sep 12, 2012

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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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    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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    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 2 Responses 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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    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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    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 am recently diagnosed with Sarcadosis through

    my optometrist.having it in both my eyes. I have an appt scheduled with a rheumatologist at mayo clinic Dec 28th,ive been sick for quite sometime,having inflammation in different parts of my body,legs,lungs.no one could give me a diagnosis until I got itin my eyes.
    nece71367 nece71367 46-50, F 1 Response Nov 4, 2015

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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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    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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    the days are getting harder.

    pain is worse.crabby and exhausted all the time.all I want to do is sleep
    nece71367 nece71367 46-50, F Nov 12, 2015

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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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    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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    Related Experiences

    I haven't had a good friend in almost 10 years. I just want someone to talk to and go out for lunch with and just hang out with. I'm not easy to get along with because I'm quiet...
    ACWK226 ACWK226 22-25, F 1 Response 54 mins ago

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    I think the reason I don't get along with people is because I don't let them close to me. Or I have unrealistic ideas of who they're supposed to be
    DiamondAuthority DiamondAuthority 18-21, F 1 hr ago

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    I have a secret , but its like only 3 people that knows what it is . They told me its prob. better if I don't tell everybody .
    hotpinkpussy hotpinkpussy 13-15, F 1 hr ago

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    Wow. Just realized I have over 110 stories shared on this site. Maybe I should take a break.
    disastercupcake disastercupcake 26-30, F 1 hr ago

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    Ok so it's only Feb but I've been away from here and people have been worried so want to update you. Im ok now but I was cheating lots over Xmas and my bf finally found out. He is...
    CheatingTracy CheatingTracy 22-25, F 5 Responses 1 hr ago

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    am I the only one that struggles in believing I have this when I know I do? like sometimes I feel like I must be a fake but other times my alter comes out so strong that I just can...
    JessygotaBooBoo JessygotaBooBoo 22-25, F 2 hrs ago

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    It's something I personally choose for. I can't actually see any person as a real friend. I also don't really want friends in my personal life. Even tho it bothers me that I'm...
    Ichki Ichki 22-25, M 2 hrs ago

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    Because in truth I take no pleasure in having to put you in your place. How's this for an example? Your buddy points out an attractive woman to you and tells you she's a sure thing...
    justnicky justnicky 36-40, F 3 Responses 2 hrs ago

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    Hi I'm new to the group. I don't even know where to begin or how to even start. My emotions are all over the place. My husband has 8 long years(2024) and I don't know how to cope...
    Karmeon2006 Karmeon2006 26-30, F 1 Response 2 hrs ago

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    I want to own my own female pet and hace her naked on all fours all the time serving me for my visual pleasure and physical pleasures when I need it. I'd have her eat out of a...
    AlovingHome AlovingHome 22-25, M 3 hrs ago

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    I've never really had a relevant way of talking about what happens with my family. I have been living away from home for 3 years now. It's only now that I've been back for 2...
    arj90 arj90 22-25, M 1 Response 3 hrs ago

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    Yes, they are horrible, but they make me who I am. All the hurt and pain, all these things that happened, continue to shape who I am, if I like it or not. I have gotten better...
    Christy243 Christy243 13-15, F 3 hrs ago

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    Have you ever wondered what it was like to go on a fast? So I am in the 4th day of a 5 day fast/cleanse. I have literally had no food since Sunday night during the Super Bowl...
    ynotjenn ynotjenn 41-45, F 4 Responses 3 hrs ago

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    I have anxiety about the fact that I'm not going to die yet. The fact that I am not going to die has me stressed out to the point where I wake surrounded in tears and I cry myself...
    Freedgorgan Freedgorgan 16-17, M 2 Responses 3 hrs ago

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    Feeling like I'm not respected. Feeling like I can't communicate my feelings. Feeling like my feelings are wrong. Feeling like giving up. Feeling like not caring. Feeling...
    St4rbright St4rbright 26-30, F 1 Response 3 hrs ago

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    There's a higher power and a lower power, What would happen if don't have the strength to overpower?!
    Bengin Bengin 31-35, M 2 Responses 4 hrs ago

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    I have to share an encounter that happened yesterday. It was a "moment" that will stay with me until I take my last breath. There is a little boy I know who has not had a lot of...
    MsJessicaRabbit MsJessicaRabbit 26-30, F 4 Responses 4 hrs ago

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    What you choose to think about and dwell on in this life will make or break you as to what type of person you will end up becoming in this life. A negative mind, never brings...
    Grace2U Grace2U 66-70, F 4 hrs ago

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