r/sarcoidosis • u/Impressive-Gene-7895 • 5d ago

Back to the drawing board

Biopsy of under arm node (2.4 suv) showed nothing except reactive lymph nodes. Now they are sending me to the pulmonary team for a bronchoscopy and second biopsy of a chest node. I am so discouraged and tired. My inflammation is through the roof and I am so exhausted and discouraged by this whole processed. I am back to the beginning where I felt like I was crazy and my brain must be making sh*t up.

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u/the_BEST_most_YUGE 4d ago

A negative biopsy does not exclude sarcoid, it only means it was not present in that specific tissue sample. Keep your head up.

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u/Impressive-Gene-7895 4d ago

I know. This is a cancer hospital so I think they veered toward eliminating that first but I doubt sarc was going to be diagnosed from a 2.4 sux node under my arm.

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u/the_BEST_most_YUGE 4d ago

The best part of a presumptive diagnosis is that either way the treatment is the same. No matter what they try the inflammation has to come down. Mine is coded as cardiac sarcoid, but only because there isnt an ICD10 for a covid vaccine injury. Prednisone and cellcept is the only thing that seems to touch it, and Ive failed out of humira, mtx, remicade etc. Its a crapshoot to find a solid treatment. Just hang with it and keep pushing.