Anyone else out there with sarcoidosis??

Hi, Looking for friends with Sarc. I have pulmonary sarc for 13 years now. I try and push my self to keep my lungs strong. We have everyday challenges, and would be nice to have someone to talk too.

Replies

  • shvits
    shvits Posts: 249 Member
    Yes, I have had for at least 16-18 years. It took them a long time to diagnosis.
  • rotorheadg
    rotorheadg Posts: 3 Member
    Hello I and rotorheadg and I have Sarcodosis offically as of Sept 2005. I found this site in August I didn't thing to look for Sarcies
  • newtonuk
    newtonuk Posts: 13 Member
    Yes, apparently I have got Sarcoidosis as well, although I am not entirely sure how it's supposed to affect me. I had a period where I had swollen ankles and following blood tests, CAT scans, biopsy etc., I was diagnosed with Sarcoidosis.

    I've always been a bit weak when it came to getting air in my lungs, but I put that down to a lack of fitness, other than that I've not been symptomatic and have not received any treatment for it. Fingers crossed it will continue this way.
  • Espressocycle
    Espressocycle Posts: 2,245 Member
    I think one out of every three episodes of House has that as the diagnosis.
  • bartoksanon
    bartoksanon Posts: 3 Member
    Told I have it this year and then advised to shield so am trying to get fit for next winter doing couch25K. But after 7 weeks have only finished week 4 as I had to start again after catching a cold and taking 2 weeks to get over it. Never mind, it's two steps forward one step back, but at least it's going forward.