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New diagnosis with conflicting symptoms

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amanda_47758
amanda_47758

I've just been diagnosed with sarc in my lungs. But I have severe nausea, stomach and chest pains which the Dr's are struggling to diagnose. I don't have lymphnoids in my stomach. The pain is so severe I am taking regular morphine does any one else have these symptoms. I live in New Zealand and we don't have any scarcoidosis specialists here.

0 likes, 4 replies

4 Replies

  • AEK
    AEK amanda_47758

    Posted

    Hi Amanda,

    I’m sorry to hear your having such a hard time! I was diagnosed last year and it started with severe stomach pain and nausea......

    Turned out to be lung sarcoidosis. Took awhile to diagnose after colonoscopy and CT scans of my tummy....

    I think you will find a lot of people have stomach issues, some more extreme like yourself that seems to go hand in hand with sarcoidosis... diet and a really good probiotic helped me a lot. 

    Best wishes to you smile

    • AEK
      AEK

      Posted

      Me again.... also if you email sarcoidosis specialist across the world you can gather your own information to discuss with your doctors....The Mayo clinic and John Hopkins hospital are amazing, there is also a professor in Canberra who is doing a lot of research on autoimmune diseases ( can’t think of his name) if I can find it I will give it to you...

      Best wishes smile

      Also I am originally from NZ  wink

    • Guest
      Guest AEK

      Posted

      Hi

      Is the John Hokins hospital you refer to in the UK?

      Thanks

      Dee

  • Guest
    Guest amanda_47758

    Posted

    Hi Amanda

    Your post is very interesting as I am being treated as if I have sarc because of certain side effects. I haven't had a lung biopsy yet. I have had a cough for years, sime scarring on lungs (CT scan), puffy eyes and stuffy nose. I regularly have raised phosphate levels in blood tests and they can't work out why. Have a lot of bone and joint pain which is osteo arthritis and possibly sarc. I've had 2 bone infusions that didn't make any difference and a steroid injection. I have occasional boughts of severe dizziness but not sure if it's connected. I'm due to see the thoracic consultant and a lung function test this month. The problem is there seems to be so many possible side effects and no real diagnosis or treatment. I don't get stomach pain or nausea. How long have you been diagnosed? I live in UK and go to a very large a well known hospital called Addenbrookes in Cambridge, part of the university.

    Best wishes

    Dee

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