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SpoonieLuna

730d

Hi there, I’m 24f and recently diagnosed with sarcoidosis by my rheumatologist based off of blood work. Are there other tests I should have done to confirm? I’d love to hear about your journey.

Top reply
    • SammyD

      515d

      You have to have a biopsy. There is no blood test out there that can definitively say your issue is Sarc VS something else. If your doc has made this diagnosis based on a blood test then what they have actually done is taken all the diseases they know of that can cause the issues you're having, run the tests they know that will give them diagnoses, and when they all came back "negative", they decided it must be Sarc because it wasn't anything else. A diagnosis of exclusion isn't a proper diagnosis.

    • SammyD

      515d

      You have to have a biopsy. There is no blood test out there that can definitively say your issue is Sarc VS something else. If your doc has made this diagnosis based on a blood test then what they have actually done is taken all the diseases they know of that can cause the issues you're having, run the tests they know that will give them diagnoses, and when they all came back "negative", they decided it must be Sarc because it wasn't anything else. A diagnosis of exclusion isn't a proper diagnosis.

    • Nollie

      546d

      I was diagnosed with pulmonary and lymphatic sarcoidosis in 2018. I had a lung biopsy

    • Kmac73

      648d

      I had lung biopsy and PET scan

    • Alco

      650d

      Biopsy from my lung

    • Karen37

      663d

      How was you diagnosed with systemic sarcoidosis?

    • Elaine_L

      673d

      They found nodules in my gallbladder and sinuses. Also, I have lung, heart, and skin involvement. I have hearing loss that they feel is associated. Plus food allergies (peanuts and red dye) when I have a sarcoid flair. I doctor with a team at Mayo Clinic.

      • Jenh

        648d

        @Elaine_L do you go to this team in person or virtually?

    • Jenh

      673d

      Hi, Elaine_L what else do you have that got you the diagnose of systemic sarcoidosis?

    • Elaine_L

      673d

      I was diagnosed via lung biopsy. I have systemic sarcoidosis.

    • SheriLeigh

      715d

      I have pulmonary sarcoidosis and was diagnosed by a lung biopsy. If you have any questions ask. Hope you are feeling well. 🙂

      • Cat1

        546d

        @SheriLeigh Is it normal to Lose so much weight . I have pulmonary. I don't have trouble breathing. My Ace is low 27. I have had a swollen lymph node under my neck going on 2 years. PET scan showed that being clear. Biopsy showed granulomas on lungs. I'm so tired.But very stressed I loss my mom Thanksgiving. I have no family left. And you know how friends are they are sick of us complaining

    • Jenh

      716d

      I had lung biopsys, it’s been scary during Covid for sure. With pulmonary sarcoidosis I’m a nervous wreck. It hasn’t been active in years, but there is permanent damage. When it was active I was mainly feeling exhausted, I was about 30 raising my baby and wondering why I was struggling so much. The exhaustion was debilitating

      • kastou

        631d

        @Jenh I can relate

    • Drama24seven

      716d

      I was diagnosed by biopsy of some big red nodules on my legs otherwise I would have had to have a lung biopsy.

    • Jenh

      722d

      What kind of sarcoidosis? I have Pulmonary sarcoidosis, I needed a lung biopsy to diagnose that. What kind you diagnose from the blood?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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