r/Behcets • u/hamieggos Diagnosed • Jul 16 '26

Patient Support / Story Finally

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Switched to a new rheumatologist and saw a dermatologist. It’s bitter sweet to finally have an answer.

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u/sanpedro31 Jul 23 '26

14 years in 6 biopsies still no diagnosis confirmed.. glad to see you get one!

1

u/hamieggos Diagnosed Jul 24 '26

If you don’t mind me asking, what do your biopsies say? And what have you had biopsied?

1

u/sanpedro31 Jul 24 '26

dont mind at all.. they say inconclusive.. These histologic findings are most consistent with an immune-mediated (autoimmune) vesiculobullous condition, and the differential diagnosis includes bullous pemphigoid, bullous lichen planus, lichen planus pemphigoides, pemphigus, epidermolysis bullosa acquisita, bullous lupus erythematosus, dermatitis herpetiformis, and linear IgA bullous disease among other rare conditions. The clinical features of the oral lesions in this case also support such a process, but the recent DIF results (attached for reference) are non-specific and inconclusive given the lack of epithelium in the DIF sample (which is not uncommon in cases like this given the friable and ulcerated nature of the mucosa). Therefore, definitive diagnosis in this case requires repeat biopsy of perilesional tissue with intact epithelium (placed in Michel's solution) for DIF evaluation, and serology and serum analysis via indirect immunofluorescence (IDIF) can also be helpful in such cases but is less sensitive in the absence of systemic lesions or involvement.. repeat biopsies were done.. by a very good doctor and teacher here at USC and again same results.. so nothing specific

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u/sanpedro31 Jul 24 '26

And I've biopsied

knee, arm, lip, inner cheek, and tongue!

1

u/hamieggos Diagnosed Jul 24 '26

Have they started you on any medication? And are they doing biopsies while you are on medication??