Thread: Sarcoidosis
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Old Tue Nov 5, 2019, 07:02 PM
Naive Naive is offline
Join Date: Jul 2016
Location: Gold Coast, Queensland, Australia
Posts: 77
Itís been a long time but I thought Iíd update on whatís 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 itís affecting their blood counts itís not tested for and not treated.

Iím not on any treatment for the sarcoidosis but itís 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 Iíve lately required more blood transfusions. I was averaging a blood transfusion every 4-6 months but now Iím requiring them 4-6 weeks. Lymphocytes are still low at usually around 0.3-0.4
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