1. Community
  2. Chest and lungs
  3. Sarcoidosis

sarcoidosis

Posted , 13 users are following.

juliy0127
juliy0127

Hi Im 49 and have been diagnosed with Sarcoidosis, after thinking it was Lung Cancer.  I had two ct scans an MRI and bronchoscopy and they found that the lymph nodes within the lungs are infected causing me chest pain and breathlessness.  My consultant is just fantastic and tested my lung function.  I was found to be mising beats per minute when sleeping and he gave me a C-PAP machine which has allieveated that tiredness and the night sweats to a certain extent.  The only maon is joint pain   has anyone had the same kind of symptoms as me xx

1 like, 22 replies

22 Replies

Prev
  • Newton
    Newton juliy0127

    Posted

    Hi Juliy. I'm 47 and was diagnosed with sarcoidosis in July 2014. I'm new to this forum too. Although breathlessness and swollen glands around the main tubes going into the lungs are often the symptoms that lead to a diagnosis being made, you'll see from all the posts here that fatigue, muscle and/or joint pain, palpitations, sweating, skin problems, sleep disturbance and a host of other symptoms are common. My own experience is that some doctors (not my superb rheumatologist) disbelieve symptoms that are outside their own field of interest. I'm out of breath walking up any incline, and can't run across the road if a car is heading for me. What I can say after six months of steroids is that things do get gradually better, but it can be a rocky road. Good luck, and Happy New Year to all the other sarcoid chums out there smile Newton
    • linda39
      linda39 Newton

      Posted

      Welcome!

      This disease has such a carbon cop[y for us all.

      I actually havent been out on steroids at all but I am on medication for my joints, this is meant to be for 2 years, so hopefully will see what my rheumatologist syas next week

       

    • Chestnut71
      Chestnut71 Newton

      Posted

      Thank you for posting this Newton - although it may be a long road, I have found this reassuring.

      Cheers.

  • Chestnut71
    Chestnut71 juliy0127

    Posted

    Hi I've just been diagnosed today - same details as you describe, and I wondered how you were doing?   I've been put on massive dose of steroids but no real prognosis as to how this will pan out.  Very much a suck it and see.  So I am curious if this is what you began with and how effective the treatment has been for your pain and breathlessness.   Would be grateful for any feedback really.

    Thanks a lot. x

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.