Post

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. 59 People

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 3 Responses Nov 6, 2012

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 10 Responses Sep 2, 2011

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 2 Responses Nov 6, 2013

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    I want to start off by saying, I love this group name. It fits my situation perfectly. I used to be such a creative, artistic, expressive person. I had a 600+ page role-play going...
    rollingdoro rollingdoro 22-25, F 7 hrs ago

    Your Response

    Cancel
    I have had this feeling all of my life just simple things to start with such as I just knew that a car was coming around the corner (living in the mountains of Kentucky on one-lane...
    Danni1982 Danni1982 31-35, F 18 hrs ago

    Your Response

    Cancel
    Hey everyone. I hope my experience can help people just as much as so many of your experiences have helped me. Im 26 and have had HS for 9 years (i think) thats how long i can...
    Meganvan Meganvan 26-30, F 2 Responses 11 hrs ago

    Your Response

    Cancel
    Here's something for you guys. Ok, if anyone is interested, I am a man and I can have multiple orgas.ms. Yes, it's possible for males also. Actually, there is a slight difference...
    Vrime Vrime 22-25, M 1 Response 11 hrs ago

    Your Response

    Cancel
    oh my goodness.He is the most charming, sexy, smart , admirable man I have ever met. Like seriously I don't think I have ever met anyone as sweet and nice as him. Woah he makes me...
    Angelina1992 Angelina1992 18-21, F 1 Response 8 hrs ago

    Your Response

    Cancel
    I have always enjoyed quietness. I don't like babies crying or people talking loudly on the phone, or people whispering in lectures.. I moved back home halfway through my second...
    leo1292 leo1292 22-25, F 6 hrs ago

    Your Response

    Cancel
    I have accepted myself, not in a way that I know myself therefore I should change everything to fit in the society and #yolo. No not that, but simply I have accepted that, me, who...
    anon152 anon152 13-15, F 6 hrs ago

    Your Response

    Cancel
    My name is Karly and I am 25 years old. My family of 6 has a history of Depression, Anxiety, ADD/ADHD and sleeping disorders. My father, sister and I suffer from all the above...
    kcmac311 kcmac311 22-25, F 5 hrs ago

    Your Response

    Cancel
    Fears, Fears, Fears #1. Thunderstorms. I dislike thunderstorms with a passion. I'm afraid of them. The lightning doesn't scare me as much as the thunder does. I dislike the noise...
    Samaccino Samaccino 16-17, F 5 hrs ago

    Your Response

    Cancel
    I have been, and still am part of a really abusive selfish mother and an enabler father. My mother is so derailed mentally, she is viciously crewel. She has antagonized me from...
    pistacchia pistacchia 46-50, F 3 hrs ago

    Your Response

    Cancel
    I have hunted ghost. I have lived in three haunted homes. I regret to inform those who think it can be explained is just not ready for reality. I have pictures and I have...
    drob8it drob8it 41-45, M 1 hr ago

    Your Response

    Cancel
    I have trouble distingushing whether or not my OCD is leading me to believe I am bisexual or not. The direction of my sexual orientation has been a theme in my head for most of my...
    travismumbles travismumbles 36-40, M 1 hr ago

    Your Response

    Cancel
    Im 23 years old i have a half sister from my father samuel bracey. All i know about my sister is her name is Heather she is 6months younger then i am so she would have been born in...
    jessicawilliamson jessicawilliamson 22-25, F 18 hrs ago

    Your Response

    Cancel
    I can't be sure and I don't want to be sure. But I have a feeling that its true. It's a very strange story I have only told 1 person and I think they judge me because of it. I...
    whatevernobody whatevernobody 31-35, F 1 Response 16 hrs ago

    Your Response

    Cancel
    I have depression and ive had it for about a year but im clean with no cuts. Although ive had suicidal thoughts and self harm thoughts everyday so my mom decided to put me in...
    KaylaBiskup KaylaBiskup 18-21, F 9 hrs ago

    Your Response

    Cancel
    i had an appointment with my hairdresser that was a rather spur-of-the-moment decision, and I only had about 20 minutes to get to the salon, which is 15 minutes away. So, I got...
    fishsweeper fishsweeper 51-55, F 2 Responses 7 hrs ago

    Your Response

    Cancel
    When I was younger my family thought my mother had bipolar disorder. I grew up in a behavioral mess of bad decisions my mother had continuously made. When I was 8 my mother...
    tswmcgee tswmcgee 26-30, F 6 hrs ago

    Your Response

    Cancel
    21 years old, paternal grandmother had it, father had it, I have it but my younger sister doesn't. Intelligent and successful but have always and continue to get teased about it...
    Darling03 Darling03 18-21, F 4 hrs ago

    Your Response

    Cancel
    So i have 9 bettas right now and 5 of them are in the same tank. 4 are females and one is a very mellow male that seems to chase the girls around but gets bored of it quickly, the...
    Colormybetta Colormybetta 22-25, F 3 hrs ago

    Your Response

    Cancel
    I was born in Southern California and when I was one and half we moved to Canada so we could be with my family. When I was in Canada I had thousands of friends and five really...
    Allallalla Allallalla 31-35, F 1 Response 2 hrs ago

    Your Response

    Cancel
    I have a lot of stress in my life.. I worry about the littlest things in life, Soon my stress led to hair pulling, and not very many people understand people with trich.. Many...
    Bflyboo14 Bflyboo14 13-15, F 1 hr ago

    Your Response

    Cancel
    Your hair, your face, your beautiful eyes...I want to tell you how strikingly beautiful you are every day, but I can't. Because you have someone in your life already, even though...
    HopelessRomantic6 HopelessRomantic6 18-21, M 1 Response 58 mins ago

    Your Response

    Cancel
    Im 14 years old and I have had maladaptive dreaming for a while although I only just found out, I don't even remember when it started. I usually start dreaming whenever I have...
    Shadow0173 Shadow0173 13-15, F 1 Response 8 hrs ago

    Your Response

    Cancel
    Physically and mentally and emotionally as well and I've just gotten out of it and it ended very badly. On top of it all I could be expecting and I had sent him a picture of the...
    Mjkittycass1985 Mjkittycass1985 26-30, F 1 Response 3 hrs ago

    Your Response

    Cancel
    My husband is addicted to heroin. Never thought I would say that. He has a chronic disease called Crohns which effects his life in so many ways. He first major surgery almost 5...
    twinmomma12 twinmomma12 36-40, F 42 mins ago

    Your Response

    Cancel
    I am a 16 year old girl with BE and I have no who I can talk to about it. I have so many questions about BE and I'm not very confident to talk to my doctor. I havent really told...
    sneekysae12 sneekysae12 16-17, F 40 mins ago

    Your Response

    Cancel
    I don't have a mother. I haven't spoken to my mother in years. She's a heroin addict who, no matter what, never seems to get better. I just recently found out that my dad is no...
    amychristineee amychristineee 16-17, F 36 mins ago

    Your Response

    Cancel
    I've lived with my step-mother, father, and brother for most of my life. Unfortunately my father worked a lot and was hardly ever home. This left my step mother to verbally and...
    americanhoney91 americanhoney91 22-25, F 20 mins ago

    Your Response

    Cancel
    This awful disease makes me think terrible things that I really don't want to think about then it makes me want to confess them to someone, especially if the thoughts involve them...
    somethingx3 somethingx3 31-35, M 1 Response 15 hrs ago

    Your Response

    Cancel