New diagnosis

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Just told today by my doctor that my ct scan shows I have sarcoidosis in my lungs. From this it seems I have had it some time. Just scared of the unknown and what path I need to take. I see a respiratory specialist next Friday. Is there a particular questions I should ask?  Also grateful not cancer. Explains my fatigue and persistent pain and cough. Does any one feel pain in their back area?  Thanks 🙏 

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  • Posted

    I have also been diagnosed last week with sarcoidosis in my chest lymph nodes.  Some granulomas in lungs.  Had bad cough since November which prompted x rays and ct scan followed by biopsy of lymph nodes.  On reflection I had low back pain with burning and tingling in feet and lower legs  last year which was diagnosed then as spondylolisthesus following MRI scan.  Could that have been linked to sarcoidosis as well.  Started on clenil modulate inhaler twice a day which has stopped the coughing.  Very tired some days and other days ok.  Further blood tests being done to rule out tb or lymphoma.  Horrible diagnosis,  stage 1 so perhaps I am one of the lucky ones.  Trying to educate myself and this forum is really helpful.  I hope you get good news following your further tests.
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  • Posted

    Yes- that is your answer for you symptoms. My husband describes the same symptoms - cough, extreme fatigue but no complaint of back pain. 

    From what I see on this forum and my husbands own experience, I would assume  oral steroids to start your treatment. My husband is also on an inhaler twice a day with an inhaler for break through needs.  At this time and with his diseases advancement the treatment plan is to more focused on protecting his lungs with treating his symptoms are the secondary focus. The initial drug, Acthar, ordered has been denied by our insurance.  It's not approved for sarcoids. He will he started on methotrexate in the next week.  

    Best to you. 

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  • Posted

    Hi Hoc01!.. I just saw your other post! Sounds like you're scheduled for a pulmonary test. The test consists of breathing in tubes hooked up to a computer the specialist will walk you through. You probably have an appointment with your lung doctor soon after..... he or she will let you know what catagory your sarcoid is in. Don't worry so much try and relax. Sarcoid is treatable. Let us know how you make out smile

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    • Posted

      Thanks for this information. It helps to here it is treatable. Just want to get on the track to doing something about it. Waiting is the hardest.  I am seeing a respiratory specialist. I will keep you posted. I have had a flare up over the last few days. Chest was very tight. I took ibuprofen today now I'm coughing up a lot of phlegm with a tinge of yellow. I will keep you posted.

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    • Posted

      Hi Big Mack.

       Update! I just saw a respiralogist last week. Over the next month I have various tests to confirm . Ecg, blood work, bronchoscopy,breathing test, etc. Felt great about figuring things out. Having a tough night. Back to stressing about outcome of tests. Reaching out because i felt you are positive with helpful info. I find some posts are gloom and doom just a quick thanks. Ps can't give up the coffee. 

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    • Posted

      Hoc01!... That's great to have all this scheduled this month! Take it one appointment at a time and it's easier said than done, but block that stress out of your mind😊.... keep busy with the things that make you happy and soon enough you won't be thinking of it. It's what I do and it helps. If you start worrying, just go do something to clear you mind. You'll thank yourself! Have you been looking and reading up on anti inflammatory foods?  Pick a few and add them in your daily meals😊 Do you have any exercise  scheduled in your day? Keep up the good work and follow up those appointments. And don't let your mind play tricks on you with that stress! Take care and talk to you soon!

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  • Posted

    The only path to take is to make sure your being seen by a doctor that is a Sarcodios specialist no just a regular lung doctor cause most of the time they don't understand the illness and from what I was put through was harsh on my body. I have stage 4 Sarcodios and its all throughout my whole body the last thing left for this to attack is my brain stem Mine started in my lungs when I was only 17 years old and now I will be 47 all my life it has been noting but a fight that I just cant win. I hope with what treatment they get you started on helps you and slows it down. I now inject myself weekly of chemo to try and give me some kind of quality of life cause there is nothing more my Sarcod specialist can do for me. I will send prayers your way that you will kick the sarcodios butt.

    ?Gina.

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