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The United States

Posted , 6 users are following.

camey03589
camey03589

I s there anyone in the United States? On this forum

0 likes, 11 replies

11 Replies

  • gwens
    gwens camey03589

    Posted

    Yes, I am from the US
    • gwens
      gwens

      Posted

      To add: I was diagnosed with pulmonary sarcoidosis in 2016. I am 32 years old. I was having rib pain which prompted me to get a chest Xray which is when the Dr's saw some spots on my lungs. I was then referred to a pulmonologist and received a CT scan of the chest which showed lots of micro-nodules throughout my lungs. I received a lung biopsy and that is when I was officially diagnosed. I was on Prednisone for about 9 months and eventually tapered off around this time last year. My most recent CT scan in December showed a significant improvement and decrease of the nodules. 

      I never really had any symptoms besides joint pain and luckily it hasn't caused me much trouble (physically) I suffer from health anxiety though, so this experience was certainly a trigger for me. 

      Not sure of your experience but hope I can help if you have any questions!

    • camey03589
      camey03589 gwens

      Posted

      Do you mind sharing where you’ve gone for treatment? Other than initial Mayo Clinic in Rochester. I have a great rheumatologist.
    • gwens
      gwens camey03589

      Posted

      I live in a really small town so I wont share publicly but my primary Dr referred me to a local pulmonologist.
  • cathy68310
    cathy68310 camey03589

    Posted

    Yes. I was diagnosed in 2012 after a radiologist saw enlarged lymph nodes on an mri. I had a  mediastinoscopy for an accurate diagnosis. I can’t say that I’ve found a doctor who really understands it. I have joint pain mostly in my hands and feet, rashes, conk out at the end of the day, brain fog... I see a Rhematologist who leans towards lupus/like autoimmune disease but no one seems to know much about sarcoidosis symptoms other than lung problems. I also have a high ANA. Does anyone else have a high ANA due to sarcoidosis? My ACE tends to be in the high normal or slightly elevated. I’m just confused if these symptoms are from sarcoidosis or something else and have never gotten a definitive answer. Thanks!
  • terry57082
    terry57082 camey03589

    Posted

    Hi, Raleigh, NC
    • camey03589
      camey03589 terry57082

      Posted

      Hi terry! I am in Wimberley, TX outside Austin. I used to spend time in Raleigh, I worked for Oakwood Homes. We used to have our yearly banquet there. 

      Hope this finds you well? 

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