1. Community
  2. Chest and lungs
  3. Sarcoidosis

Sarcoidosis discovery? need some help

Posted , 3 users are following.

alzbba
alzbba

I was told that I have bilateral hilar enlargement however the right side is slightly larger. CT scan is Thursday. I visited my doctor for swelling on both ankles and knee pain on both. I then told her about my cough and wheeze. She sent me for a chest xray. Doctor told me all blood work is perfect, lungs are clear, just the two enlarged hilar. my mother suffers from Sarcoidosis, however the doc mentioned that it could be lymphoma because of the similarities. I am freaking out and would like to know if anyone else has experienced the symptoms and simliar discovery.

0 likes, 19 replies

19 Replies

Next
  • Flo1949
    Flo1949 alzbba

    Posted

    HiAlzbba,  I also had the same diagnosis last year following persistent cough.  Lymphoma was ruled out following blood tests and sarcoidosis was confirmed after lung biopsy.  I also had enlarged hilar enlargement.  I was prescribed an inhaler which has resolved the cough issue.  I am feeling well apart from feeling tired at times.  Due to see my consultant soon.  I too feared the worst but overall am not affected too much and am able to live a normal life.  I wish you all the best.
    • alzbba
      alzbba Flo1949

      Posted

      Thank you for the reply. Did you have any wheezing ? also did they perform a CT scan before the biopsy?
    • Flo1949
      Flo1949 alzbba

      Posted

      They did biopsy at same time as ct scan.  I had a lot of catarrh and sometimes thought my voice box was affected but all that has cleared since using the steroid inhaler.  I didn’t really have much of a wheeze.  
    • alzbba
      alzbba Flo1949

      Posted

      I really appercaite your kind responses. I am experiencing some horseness in my voice, cuts in and out sometimes.I have a wheeze but I have to almost force it out. Did you lose any weight or night sweats during your diagnosis?

      Thank again

    • Flo1949
      Flo1949 alzbba

      Posted

      No night sweats but I did lose about 1 stone in weight.  I am now 9 stone. It may have been partly due to worry and as my doctor thought it was reflux I was trying to lose some weight by being careful with my diet.
    • alzbba
      alzbba Flo1949

      Posted

      I am also watching everything I eat. any chest pains ? where both of the hilar enlargement same size or one larger than the other? sorry for all the questions.
    • Flo1949
      Flo1949 alzbba

      Posted

      Left hilar was more prominent.   I sometimes get chest pain due to anxiety as I have a prolapsed moral valve but sarcoidosis doesn’t  in itself cause it.  Try not to worry as chances are like me it will be mild.  Mine is stage 1 and I don’t need to take any pills for it.
    • Flo1949
      Flo1949

      Posted

      Typing error,  should read mitral valve.
    • alzbba
      alzbba Flo1949

      Posted

      in my case the right is larger. does anyone else in your family suffer sarcoidosis? I am very scared that it is not lymphoma and the unknown. If you can provide any other symptoms you had that would be great. Thank you for taking the time in answering my questions.
    • alzbba
      alzbba Flo1949

      Posted

      also if you don't mind can you tell me your sex, age and how long have you had sarcoidosis? sorry for the bother and wish you all the best !

    • Flo1949
      Flo1949 alzbba

      Posted

      I am female and 68 years old.  I was diagnosed July last year.  There is no family history of sarcoidosis.  Other than fatigue at times I don’t have any other symptoms apart from a cough at times which isn’t severe.  My symptoms are not getting any worse and I am thinking positive that it will not.  
    • alzbba
      alzbba Flo1949

      Posted

      Thank you and wish you all the best !
    • alzbba
      alzbba Flo1949

      Posted

      sorry to bother you once again but I am a male in Canada and 35 years old. Just wanted to know how they ruled out lymphoma by your blood tests? where they normal or different values? I have not been diagnosed with sarcoidosis as of yet, I am worried about lymphoma.
    • Flo1949
      Flo1949 alzbba

      Posted

      There is an ACE blood test that was raised which happens when sarcoidosis is active.  My biopsy showed granulomas in the lungs which confirmed the diagnosis.
    • alzbba
      alzbba Flo1949

      Posted

      Thank you for the reply. Is the ACE blood test a separate or specific blood test compared to the normal blood test?

      Thanks again

    • Flo1949
      Flo1949 alzbba

      Posted

      It is a separate blood test that my GP did.  Mine was quite high, can’t remember the number.
    • alzbba
      alzbba Flo1949

      Posted

      Hi Flo1949,

      hope your doing well. so it's official I have sarcoidosis. Going to see a specialist next week. My attack started a few weeks ago with bilateral ankle swelling and knee to the point I could not walk. The selling is gone however I still feel ache and pain. The cough is better, less frequent now. Any tips you can provide?

      Thanks again

    • Flo1949
      Flo1949 alzbba

      Posted

      Glad to hear that your symptoms are less severe.  Apparently you need to avoid excessive sunshine as vitamin D can be a problem as too much is already being produced by sarcoidosis.  
Back to top
Next

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.