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Sarcoidosis

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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 part...

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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,,,, it's...

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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 doctors...

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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 and...

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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 lip...

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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 pulmonary...

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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 various...

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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 without...

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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 anyone...

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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 is...

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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 therapist....

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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 me...

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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 uncomfortable...

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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 was...

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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 but...

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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 comments...

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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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  • New Sarcoidosis Diagnosis

    Hi I'm a 46 year old female recently diagnosed with Sarcoidosis which was confirmed by a chest lymph node and lung biopsy. I have several symptoms that are quite severe such as blurry vision, shortness of breath, difficulty talking due to raspy stressed voice and breathlessness, fatigue, sore joints...

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  • Swollen lymphnodes

    Hey im wondering anyone else out here who has swollen lymphnodes?? On the neck, shoulder, chest and arm pitt only on the left side, also the top of my left foot keeps swelling but then goes down and the pain is consent so sore im at my witts end. Any advice please!!

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  • Sarcoidosis discovery? need some help

    I was told that I have bilateral hilar enlargement however the right side is slightly larger. CT scan is Thursday. I visited my doctor for swelling on both ankles and knee pain on both. I then told her about my cough and wheeze. She sent me for a chest xray. Doctor told me all blood work is perfect,...

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  • Severe fatigue and hallucinations

    Hi, my husband has so many issues from this disease. He also has A. Spondylitis. He has had months of sleeplessness, constant edema, some sores onlegs. Has breathing issues. DOES anyone relate to the falling asleep as though u have narcolepsy? He is sleeping better at night now with no explanation-but...

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  • Steroid treatment!

    To all sarcoid patients or suspected sarcoid diagnosis. This is very important; please keep in mind that if you suspect you have sarcoidosis or a medical professional has suggested treatment or testing for diagnosis or confirmation. It is likely that if you have taken steroid therapy for any other treatment...

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