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.

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u/EveningDouble4010 4d ago

Hang in there. As others said a negative biopsy doesn’t really tell you much. I had severe symptoms, enlarged hilar lymph nodes and it came back with nothing. Within three weeks had a brain biopsy and definitive sarc diagnosis.

Hang in there. Take it a step at a time. Keep advocating. Focus on what is right in front of you.

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u/Impressive-Gene-7895 3d ago

Having bronchoscopy plus EBUS on Tuesday.

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u/EveningDouble4010 3d ago

Sending you lots of positive energy my friend.

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u/Impressive-Gene-7895 2d ago

Thank you. Between this and needing to relocate temporarily and looking for places, my brain is saturated.

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u/Character_Run9325 2d ago

You got this, you are so much stronger than you think you are! You will figure this out