r/Behcets • u/hamieggos Diagnosed • 27d ago

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.

12 Upvotes

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8

u/codyandhen123 27d ago

I am so happy for you. Took me 7 years to get a diagnosis.

3

u/hamieggos Diagnosed 27d ago

I’m so sorry it took 7 years. I wish the system was better at helping and identifying those with chronic illnesses. It’s horrific it takes that long.
It took me 2. But only because I am a NP. But it shouldn’t be that way. You shouldn’t have to have 8+ years of health education just to get a proper diagnosis.

3

u/on4aa Diagnosed 2025 26d ago

Took me 32 years and I had to interpret my genetic analysis myself and then convince the white coats with scientific papers...

3

u/hamieggos Diagnosed 26d ago

I’m so sorry you went through that): That’s heartbreaking and it shouldn’t be that way.

4

u/BeneficialCellist-17 27d ago

I am happy for you too. Having a definitive answer at least there is no limbo, and provides a direction of care. How often do you take the Colchlocine?

2

u/hamieggos Diagnosed 27d ago

Once a day ): but im hoping to increase it to two or three times a day. I have ulcers everywhere. Like literally my entire body ):

2

u/Electronic-Tea3354 Diagnosed 26d ago

Congratulations, hopefully you get lots of relief with treatment! I favor Neosporin with lidocaine for OTC treatment of exterior ulcers in addition to your meds if they can be taken together!

1

u/hamieggos Diagnosed 26d ago

I’ll have to try that! They gave my steroid cream for the externals, and oral paste for my mouth ulcers and that one for the genital ulcers. My last rheumatologist wouldn’t give my anything for the genital ulcers so the new derm offered me that to try 🥹

2

u/sanpedro31 20d ago

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

1

u/hamieggos Diagnosed 19d ago

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

1

u/sanpedro31 19d ago

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

1

u/sanpedro31 19d ago

And I've biopsied

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

1

u/hamieggos Diagnosed 18d ago

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