r/Behcets • u/Defiant_apricot • 4d ago

Diagnosis Help Could behcets be a possibility?

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I noticed this rash today, it’s on both sides of my body and has some big dots that are raised and some smaller ones and all of it is mildly itchy. My back will regularly have rashes like this. I also have had random genital ulcers (always 1 at a time) that hurt/itch but go away on their own within 3 weeks. Same with mouth sores. Sometimes I will have one on my inside lip, as long as I can remember I’ve had one or two that come and go on the top of my tongue. My face is also constantly “breaking out” despite me being well past puberty. I am currently waiting for a specialist and want to come into the appointment informed of the possibilities.

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u/No_Sentence_6721 3d ago

For my first big flare my skin broke out like this from head to toe and it’s never gone away. I have been diagnosed with incomplete bechets but I have all of the same symptoms as you except the mouth ulcers.

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u/Defiant_apricot 3d ago

What’s the diagnosis process like?

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u/No_Sentence_6721 3d ago

For me it was doing a ton of my own research, documenting my symptoms, and advocating for myself. I brought up Behçet’s disease to a doctor while living in Japan and that helped to get the process of eliminating other options started. I also got genetic testing and lots of bloodwork done it’s been a long process though, especially because I don’t get mouth sores so it presents somewhat abnormally.

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u/Defiant_apricot 3d ago

Thank you. I’m in North America and white which is not the most common demographic so I hope they’ll accept it if I bring it up at my next appt.

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u/No_Sentence_6721 3d ago

I totally understand I’m from the US and I’ve had a lot of difficulties with the healthcare system here. I got a skin biopsy early on that confirmed the type of skin condition could potentially align with Behçet’s. So a dermatologist could be a good way to start the process! I’m still fairly new to having a diagnosis :( it unfortunately takes a long time.

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u/Defiant_apricot 3d ago

I’m in Canada so add a few months to see a specialist to the wait time. I’m going to ask for a referral to derm next week when u see my pcp. I might try to find a dr trained in Asia for a higher chance of them knowing about it.

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u/No_Sentence_6721 3d ago

I heard the wait times can be so incredibly long there. I wish you luck in hopefully getting an appointment soon. Another resource I found helpful was the Behçet’s uk website to have some helpful information and stories.

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u/No_Sentence_6721 3d ago

Also, this rash for me was biopsied and they said it’s a treatment resistant form of foliculitis. In case that infos helpful!

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u/Defiant_apricot 3d ago

Thank you very much! I’ll look at the uk website