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Sarcoidosis

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  • Severe reaction to the sun

    I have chronic Sarc.  Lungs skin scalp eyes face ears.  40 years progressive.  This year Ive had a severe reaction to the sun and hot weather.  Eyes stinging and watering nose running skin inflamed and sore. And of course fatigue.  Anyone else had this reaction ?

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  • Sarcoidosis symptoms

    I had ct they said swollen lymph nodes, they did biopsy and final diagnosis was granulomatous inflammation non-necrotizing.Going to pulmonary doctor today due to shortness of breath. My question is does anyone with sarcoidosis ever experience bouts of nausea, and pain by their right shoulder blade. …

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  • Wood and wildfire smoke

    Hey all.  I was diagnosed with pulmonary sarcoidosis in 2011 by biopsy.  I’m now 54.  Prednisone works so well on me it’s scary, but so are the long list of issues with it.  I live in Montana and forest fire smoke is already here from other states fires and the air is at …

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  • newbie

    Hello I was on a forum for pmr for11/2 years  finally off prednisones for one week started getting night sweats fever difficulty breathing. Hospitalized had bronchoscopy and diagnosed with sarcoidosis. Night sweats went away after starting again on prednisone 25 mg  and medicine for …

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  • My husband has just been diagnosed

    he also has haemocromatosis and memory loss, could this all be related. He has been told by the cardiologist that he has sarcoidosis but he has still to meet with Respitory Consultant. He has also been on a trial recently for his memory loss

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  • Sarcoid and Hypercalcemia

    I have had a flare up in the form of high blood calcium. I was admitted to the ER with a calcium level of 15.2 and my creatinine was 3.14. The high calcium cause some permanent kidney damage and i have been trying to get my calcium and creatinine levels stable for over 10 months now. I have been on …

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  • FND

    Hello, I'm sorry for a late reply or two but I've had quite a few problems and a long time in hospital, OK has anyone had or heard of a condition called FND, I've been pulled prodded and poked and a few needles as well, Apparently it's similar to sarcoidosis as it can affect any …

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  • Sarcoidosis really sucks

    Hi all, does anyone else have headaches that floor you, add in some constant tinnitus, persistent upper respiratory infection (staffocous Sirius) that blocks off upper airway with very large hard crusts of,,,, well,,,,, snot. My neurologist started me on botox (for migrain) but Im in agony,,,, …

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  • Residual Cough

    Hi!  Still unofficially diagnosed with Sarcoidosis but all professionals seem to be leaning that way.  Those with Sarcoidosis of Lunga do you have a residual cough even when it’s inactive?  My pulmonologist believes it’s not active now but I consistently cough throughout that day …

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  • sarcoidosis may be attacking my brain

    ...am concerned because i think sarcoidosis may be attacking my brain ...feel dizzy at times and have trouble focusing off and on also ...have no idea what if anything i can do about this ...wondering if exercise would help ...was diagnosed in Nov. 2016 with cancer by ...but after going to many …

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  • Living with terminal sarcoidosis.

    I systematic sarcoidosis since around 1996. It is in every organ and was sent home to die in 2011. I refused to except that diagnosis and am still here today. That was my diagnosis from the Mayo clinic in Rochester Minnesota. I continue to keep a positive attitude and surround myself with laughter …

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  • Dx with Sjogrens about 6 years ago

    Now I have a new Rhuematogist that has decided that my dx was premature and possibly wrong because my ANA never supported the dx even though my eyes are extremely dry and my paratid glands stop up, swell up and hurt. He took me off plaquenil 6 weeks ago to get it out of my system so he can have a …

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  • Alexandra thomson

    I’ve had sarcoidosis for. Seven years made worse after overdose of chemotherapy, on cortisone tablets everyday, no end in sight

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  • Still waiting for diagnosis. Oh the stress!!!

    Hi! I posted before. Had a nasty cough in February that would not Go away- tickle in my throat,dry cough, no fever, hard to catch my breath,felt like I was straining to get mucus out of my lungs but there was none- nonproductive cough. It was terrible.  Abnormal CT scan showed multiple …

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  • Granuloma

    Hi everyone, I had a lump on my forehead removed 4 weeks ago. The biopsy result came back with - inflammatory granuloma tissue and the lab report  mentioned sarcoidosis. My father had this for years before he died. I have a weird rash and lumps on front of lower legs. Lumps under skin in …

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  • Abnormal CT Scan Infection/Inflammation Possible Sarcoidosis

    Hello.  40 year old female and have had no prior health issues other then winter colds each season until I had a respiratory infection in Feb. X-ray and CT scan abnormal. Had a consult with a lung specialist who determined infection or inflammation. Had the Flu in March which resolved …

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  • Sarcoidosis specialist in Scotland

    Hi all, I'm new to this forum having just had an empirical diagnosis of sarcoidosis. In hindsight I have clearly had it for years but had a major flare in the last 6 months, leading to further investigations and diagnosis. I am now waiting for a referral to a respiritory consultant. Can …

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  • sarcoidosis confirmation and prognosis

    Hi Everyone, I was diagnosed with sarcoidosis via CT scan in my lungs, more specific bilateral hilar. They are farily large and inflammed. I saw a pulmonary specialist today and he wants to perform a bronchoscopy, however i have been already diagnosied with sarcoidosis from the same hosptial he …

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  • Do I have it?

    Hello,     I just found this group after searching for information about some symptoms I have had for a while now.  I have a mass growing next to my eye.  They biopsied it 2 weeks ago and one specimen came back as a granuloma.  (the other specimen is still being tested) …

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  • Sarc support group. Survivors join us on facebook tomorrow

    Hi all, Tomorrow teamandreafight will be hosting our 4th annual sarcoidosis awareness day! We are looking for survivors of sarc and people who love and support them to join us. There will be health info via our RN.holistic info via our reiki master. Mental health segment with our licensed …

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  • 4th annual sacoidosis day!

    Calling all sarcoidosis survivors, please join us today on FB live! 2-5pm...lots of information. Share. commune. support. Raffle. Get valuable information on holistic treatments. Therapies. Modified zumba. Mental health segment💜 cant wait to see you there💜

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  • Sarcoid and the crazy aftermath

     Hello I just joined this group and I was diagnosed eight years ago my problems are wide and varied at first I was affected with joints ,skin ,lungs and liver after that came major depression among other issues.  Since then I’ve had a few flareups and if anybody needs advice or help shoot …

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  • Hello all

    I have recently been told that I have sarcoidosis in my lungs. My cough is driving me mad which I have now had for 2 years. I had a broncoscopy and lung wash 6 weeks ago and have an appointment at hospital this week.  At at the moment I am really struggling with cough and feeling so …

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  • So worried - spouse needs a lung transplant but he is so sick now

    My spouse Robert was diagnosed with Sarcoidosis in 2010. He had been working in a foundry as a sandblaster using a paper mask and a welders helmet he was provided with. He was seeing a respiratory specialist in our hometown until 2016 when I asked that he be referred to Hamilton or Toronto. Robert …

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  • Sarcoidosis

     I need all the information I can get on sarcoidosis what can I do to keep it from becoming active anything you can tell me on sarcoidosis would be helpful thank you very much 

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  • Sarcoidosis in eyes

    Hi I’ve been diagnosed with sarcoidosis in my skin and both lungs waiting to see specialist, i have since summer really light sensitive eyes they get watery and hurt sometimes I can’t even bear to look at phone or tablet screen  I had eye test last year when symptoms were there sight was fine …

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  • Inactive sarcoidosis

    I was just recently diagnosed with sarcoidosis it is inactive. Has anyone else been recently Diagnosed with an active Sarcoidosis if so have you ever heard of anyone else have an in active sarcoidosis and it’s staying in active

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  • Finding prayer offensive?

    Apparently some are finding prayer, or recognition of a higher power offensive. It wasn’t intended to be. What is intended are that my participation be from actual facts that I have lived through personally always seeking others knowledge in positivity. No one needs pessimism or disinhearted …

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  • Sarcoidosis

     Sarcoidosis   We have to all not give up says we do not have a cure for this terrible disease please send me some information on this thank you and God bless 

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  • Bone Pain

    Does anyone have localized bone pain or joint pain with their Sarcoidosis?

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