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

    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

    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
    2 Responses Feb 7, 2011

    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
    2 Responses Sep 12, 2012

    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

    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
    46-50, F
    1 Response May 10, 2014

    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

    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

    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

    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
    4 Responses May 2, 2015

    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

    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
    1 Response Nov 6, 2013


    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
    Sep 22, 2010

    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
    9 Responses Sep 2, 2011

    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

    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

    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

    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

    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

    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
    Aug 7, 2015

    I have had this for four years

    and I too experience the feeling of alone and not being understood.you go through the pain and swelling and it has been so long that I feel my loved ones just look past me now.you want to scream and cry and say feel for me but u know it does no good because they will just expect...
    jraley175 jraley175
    46-50, F
    1 Response Mar 9, 2016
    deleted deleted
    1 Response May 4, 2015

    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

    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

    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
    7 Responses Sep 26, 2009

    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
More Stories