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Recently I was diagnosed with Sarcoidosis in my Lung

Posted , 6 users are following.

shonne68760
shonne68760

Hi everyone and I think this group is very educational. My doctor ha just recently diagnosed me with Sarcoidosis in my lungs and thinks it's at the early stage of 1, my question is how fast the stages can advance? I go for another CT scan in 3 months along with another ACE test, is 3 months too long to wait for another scan? Could it advance before the next scan?

0 likes, 10 replies

10 Replies

  • sandra26472
    sandra26472 shonne68760

    Posted

    3 months is not to long.. I'm newly diagnosed and live in a small town where waits for specialists is extremely long... what medicine are you on?

    • shonne68760
      shonne68760 sandra26472

      Posted

      My doctor put me on an inhaler, I also take Singulair for Allergies but he said that would help with any breathing problems i may have. My first appointment with the Rumatolgist will be September 1st. Not sure what will happen there
  • rae2002
    rae2002 shonne68760

    Posted

    What is an ACE test?  My doctor  saw me once a month but I had some pretty ugly lungs. He did a biopsy to fet diagnosis because it looked liked a tumor. 
    • david96615
      david96615 rae2002

      Posted

      ACE is a blood test indicater which is used to look for activity of inflamation  through your blood cells. It should not be used as the only diagnoses a biopsy is still needed to confirm.
    • shonne68760
      shonne68760 david96615

      Posted

      I see the specialist the 1st of September so I guess I may still need a biopsy then, i was hoping I wouldn't have to , seems kinda scary

  • katld
    katld shonne68760

    Posted

    Hey shonne i think thats about average tbh. And im not really sure for example i have been diagnosed for a year but actually started having symptoms before that 2 years before after having my daughter its still active but ok.

    If you have been diagnosed predisolone which is usually the first way with treatment you should be feeling better in a few weeks they work quite quickly. Problem is they have so many side effects on there own. There are other medications you can take though. Im sure your specilaist will run through it with you xxx

  • alison50806
    alison50806 shonne68760

    Posted

    Hi shone, I know it sounds pretty scary to be diagnosed, but just to reassure you the stages are not progressive. Being diagnosed stage 1 does not mean you will go on to stage 2 , 3 or four. I had stage 4 sarcoidosis, but after treatment my breathing is good and I am able to do many things that before were impossible.
    • shonne68760
      shonne68760 alison50806

      Posted

      Thank you that makes me feel alot better. My doctor really didn't explain much, i see the specialist the first part of September

  • katld
    katld shonne68760

    Posted

    Its all the guessing and not nowing i suppose. 1st of septemeber isnt too far away it will fly by. Hope your feeling ok smile xx
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