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sarcoidosis confirmation and prognosis

Posted , 7 users are following.

alzbba
alzbba

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 on call for.He says that he has to rule out other conditions. Has anyone gone through the procedure and should I be concerned? I am worried about Lymphoma but he said it is very very slim and "you don't look like someone sick with lymphoma ". all blood work is fine and lymphocytes are fine. Looking for anyone with similar exprenince and I am guessing every sarcoid lung patient is fine through what I have. Gold bless.

0 likes, 12 replies

12 Replies

  • alzbba
    alzbba

    Posted

    can a group of radiologist make a mis diagnosis ? or is he just confirming that it sarcoidosis and how he should treat it?
  • tyagi
    tyagi alzbba

    Posted

    Hi. It's a fairly normal procedure to give a definitive diagnosis and show that you have Sarcoid tissue. CT scan only shows that it is very likely.

    It isn't a pleasant experience however - I would ask for anaesthesia (local would do) unless you don't have a gag reflex. Good luck !

  • sally10915
    sally10915 alzbba

    Posted

    Hello, i was diagnosed some yrs ago with pulmonary sarcoidosis and yes i was first told it was either lymphoma or sarcoidosis..the bronsocopy was done and later confirmed it was sarcoidosis. The md put me on prednisone which wiped all my symptoms away however time to time i have a flare up..you will be fine trust me i was in your shoes once and yes a bit afraid once they start treating you..you will be back to your normal daily life.

    • alzbba
      alzbba sally10915

      Posted

      thank you for your reassuring words. once they did the CT scan did then diagnose sarcodosis? thank you again
  • Teamandreafight
    Teamandreafight alzbba

    Posted

    I believe confirmatory diagnosis of lung sarc is with MRI/CT of chest with symmetric bilat hilar. Is he considering the bronch for biopsy or just to diagnose? Either way if having respiratory issues a bronch could be beneficial.
    • alzbba
      alzbba Teamandreafight

      Posted

      thank you for your reply.He wants to proceed with the bronch for a biopsy. Ct scan has already confirmed sarc.
  • carrie75
    carrie75 alzbba

    Posted

    I went through this exact thing and had been diagnosed with Sarcoidosis, then it went into remission and came back a couple of years later and I was terrified that it was going to be lymphoma. It wasn't and I'm sure yours isn't either but I completely understand what you are feeling. Don't worry, everything will be okay. Let me know and God bless you.

    • alzbba
      alzbba carrie75

      Posted

      Thank for sharing your experience carrie75. It hard enough dealing with this illness but something worse is just scary. My mother also had sarc when I was a young boy.
  • Voodoodoll
    Voodoodoll alzbba

    Posted

    Hi,

    I am exactly going through the same right now. I will have a bronchoscopy in the next two weeks, and I am s**tting myself.

    All blood work is okay, doc thinks that 99% sarco, however there is still 1% they have to rule out I guess.

    I have joint pains for two months now.

    • alzbba
      alzbba Voodoodoll

      Posted

      have you checked your ACE level? my is elevated which also suggests confirmation that scarc is active.
  • Voodoodoll
    Voodoodoll alzbba

    Posted

    Hi, I actually got it done today. Also I got a breathing test in the hospital today, report will be sent to my doc...in a few days i should hear from them. I dont think that it went well to be honest... I am just tired of the constant joint pain and this whole thing not knowing 100%what I have etc.

     

    • alzbba
      alzbba Voodoodoll

      Posted

      I had all those tests done. You will be fine. You can be sure it's scarc of the ACE level elevated. I am scared but trust me if it was the "other" you would be very sick. I will keep things updated.

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