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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

    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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    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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    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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    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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    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

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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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    deleted deleted 26-30 May 4

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I can't wait til we have kids someday. I like to imagine we'd have twins, a boy and a girl, and their names will be Scarlet and Nathan, but there's a chance that will never happen...
    MrMenShow MrMenShow 18-21, F 5 mins ago

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    I want to have a baby so please help coz my man n I have been trying for a long time now n still nothing ... I never get ****** during intercourse... could that be the problem...
    jabue jabue 26-30, F 1 Response 6 mins ago

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    Those who say, "If I can do it, anyone can do it," get on my nerves so much that I now tune them out. I'm not speaking of a passing remark because I think we have all said it at...
    Carissimi Carissimi 56-60, F 10 mins ago

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    I often think of life, and all that it consists of. Getting married at such a young age of 19, I wonder how life would have been different, had I waited, and been more focused on...
    HeartOfPoetry HeartOfPoetry 36-40, F 40 mins ago

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    I have so many moments where I have a rather difficult time finding my focus. This makes for a very foggy day. It's usually stress induced by the high expectations I put on myself...
    snowberry75 snowberry75 36-40, F 58 mins ago

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    Ever since I was a little girl I've been able to predict what was to happen before it happened. I wouldn't have visions or anything of that nature. It started off as little things...
    accebergnimelf accebergnimelf 18-21, F 1 Response 1 hr ago

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    i have hit rock bottom... im a mess...i lost all sorts of caring about anything...i really dont care and i do mean not to care anymore about anything . .i just dont anymore for...
    LegendBattles LegendBattles 26-30, M 1 hr ago

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    I was diagnosed 3 years ago. I later found out I had endometriosis, and they wanted to give me a hysterectomy at 19. I have been severely over weight all of my life, but this last...
    kgucc kgucc 18-21, F 2 hrs ago

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    I've had axillary hyperhidrosis since middle school. It has completely taken over my life and I don't know what else to do. I remember when it all started.. I was in my art class...
    Brittaaaaanny Brittaaaaanny 18-21, F 3 hrs ago

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    Does anyone here struggle with finding people who won't victim blame or attribute everything you think or do to borderline personality? It just makes it harder to trust one's self...
    rainbowsmangos2015 rainbowsmangos2015 22-25, F 2 Responses 4 hrs ago

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    I am okay if I don't think about it but as soon as the thought comes back or I hear of someone I know go through it too my heart breaks all over again. I can't look down the baby...
    MyLife0219 MyLife0219 22-25, F 5 hrs ago

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    If the laws are recognizing more and more that animals shouldn't be treated cruelly, do animals have "rights," as children do? Children are dependent but with basic rights. If...
    CuriousGuy833 CuriousGuy833 22-25, M 2 Responses 5 hrs ago

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    are any of you mom's ? I'm 25 and a mom of two. when I was 20 and had my first child I moved out of my mom's house and kept a careful distance from her. I'm like most of you...
    thedaughterinlawfromhell thedaughterinlawfromhell 22-25, F 5 hrs ago

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    Fatigue is a common symptom of psoriasis/PsA. I was wondering if those of you who have taken Enbrel, Humira, etc. have noticed if you struggle with it more when you're on or off...
    GuitarGirl19 GuitarGirl19 22-25, F 6 hrs ago

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    Well since I was ran over I am extremely scared of driving and being in parking lots. I am constantly looking around and my heart begins to race if I see a car pulling out. I will...
    DeIuxedEdition DeIuxedEdition 18-21, F 3 Responses 6 hrs ago

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    I was depressed in my early 20s and I felt like I could see this bottomless pit I was going to fall into. But it got better. I became a working professional, I have a beautiful...
    hotwasabizen hotwasabizen 41-45, F 2 Responses 7 hrs ago

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    I got cured from cancer few months back but i yet continue to drink almost thrice a week. I cough so much and today i was bleeding blood. I have no clue wat to do with life. I...
    deceptiveoutofcloset deceptiveoutofcloset 26-30, F 7 hrs ago

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    Imagine the reaction you'd get telling someone you have no friends. I have told two people one said none at all.. The other said that's not very good is it. :( it's worrying.
    Paleandpolluted86 Paleandpolluted86 26-30, F 2 Responses 7 hrs ago

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    I have suffered with Hyperhidrosis for most of my life. Although it affected the way i lived growing up, i tried not to let it take all control. Now at 23, it feels like i have...
    mh125 mh125 22-25, M 2 Responses 7 hrs ago

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    My mom thinks my anxiety isn't too severe to take me to a professional. My mom thinks that I'm just going through a "phase" and I'll get over my anxiety soon. She doesn't know that...
    SmartYetUgly SmartYetUgly 13-15, F 2 Responses 8 hrs ago

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    I have 8 tattoos 5 on my legs 2 on my chest and 1 on my back
    25chris25 25chris25 22-25, T 1 Response 9 hrs ago

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    ...At some point, it’s inevitable that a self-driving car will have to choose between killing you to save nearby pedestrians, or killing the pedestrians in order to save you. It...
    NanamiChiaki NanamiChiaki 16-17, F 9 hrs ago