1. Community
  2. Chest and lungs
  3. Sarcoidosis

Do I have it?

Posted , 5 users are following.

kw12193
kw12193

Hello,

    I just found this group after searching for information about some symptoms I have had for a while now.  I have a mass growing next to my eye.  They biopsied it 2 weeks ago and one specimen came back as a granuloma.  (the other specimen is still being tested).  I have several other symptoms that I feel fit with sarcoidosis.  I have been extremely fatigued, have muscle weakness, shortness of breath, very achy joints and muscles and a rash on my lower legs that showed up about 2 months ago.  I am a 54 yr old caucasian female, if that matters. What do you think?

0 likes, 11 replies

11 Replies

  • faz04177
    faz04177 kw12193

    Posted

    Hi 

    The symptoms are similar but do not worry to much it might just be something else. 

    Take plenty of walking excercise and eat lots of non citrus fruits and avoid fatty and fried foods as much as possible., especially fizzy drinks. 

    Hope your results are clear. 

    Faz

  • camey03589
    camey03589 kw12193

    Posted

    I as well am 54, please don’t stress it only makes it worse, if you have it or don’t be as healthy as you can’t be regardless of what it is, treat the symptoms. Find a rheumatologist, there are soooo many things it could or couldn’t be.
    • kw12193
      kw12193 camey03589

      Posted

      Thank you! I thought it was lymphoma, but that was ruled out today.
  • cris_b
    cris_b kw12193

    Posted

    KW   Those symptoms sound very familiar but you need to wait for your biopsy to come back. It took a while for the Docs to diagnose me. Keep me updated when you find out any news.  Take care. Cris 
    • kw12193
      kw12193 cris_b

      Posted

      Thank you! My mass was determined to be a "dermal granulima". If it was sarcoidosis what would the mass diagnosis be called? The doctor said she wants to do further testing with bloodwork and a chest xray. She didn't say "sarcoidosis", but to me it sounds like she is looking at it. I'm waiting for her to call me back. I have lots of questions!

    • cris_b
      cris_b kw12193

      Posted

      I know it really stinks to have to wait . When I said a while it took weeks for them to diagnose me. In that time my symptoms really went down hill fast. So pay attention to what your body is telling you. If your symptoms get worse get ahold of your doctor.  They were able to start me on prednisone while I was waiting for results 
    • camey03589
      camey03589 kw12193

      Posted

      Lymphoma was my first diagnosis as well. However like everyone has advised you listen to your body. Sarcoid is a granular disease. Hang tight keep posting.
  • david03145
    david03145 kw12193

    Posted

    Hi KW, the tests on the granuolas would be the guide to whether you have Sarcoidosis or not!

    You certainly seem to have some of the symptoms but you should chase your medics for that definitive answer.

    I hope you find the help you need shortly.

    Good luck

    David

    • kw12193
      kw12193 david03145

      Posted

      Thank you!  I'm just impatient, I guess.  They want to go with a wait and see approach.  I'm not excited about that.  I'm having issues with my eye and don't want to find out down the road that I have permanent damage that could have been avoided. I am waiting for the results of the ACE blood test, but I've read you can have sarcoidosis and it doesn't always show up on the test.  I'm trying to be vigilant without being paranoid, but it's a fine line!

Back to top

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.