Thread: Sarcoidosis
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Old Tue Nov 5, 2019, 06:02 PM
Naive Naive is offline
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Join Date: Jul 2016
Location: Gold Coast, Queensland, Australia
Posts: 77
It’s been a long time but I thought I’d update on what’s going on. I had further tests and was found to have pathologically enlarged lymph nodes in 6 zones in my chest. I proceeded to biopsy which confirmed Sarcoidosis (there was some discussion, it may have been lymphoma).

I have sarcoidosis in my chest, skin, spleen and possibly heart and kidneys. The sarcoidosis specialist said that a lot of people with sarcoidosis have it in their bone marrow but unless it’s affecting their blood counts it’s not tested for and not treated.

I’m not on any treatment for the sarcoidosis but it’s considered a chronic form.

My blood counts have still been fairly stable although my chronic neutropenia (at least 16 years) has suddenly improved and they are now on the higher end of normal, and I’ve lately required more blood transfusions. I was averaging a blood transfusion every 4-6 months but now I’m requiring them 4-6 weeks. Lymphocytes are still low at usually around 0.3-0.4
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