Possible Behçet's Syndrome: Hi there, I have... - Behçet's UK

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Possible Behçet's Syndrome

Butterflyshy88 profile image
6 Replies

Hi there,

I have suffered with recurrent bacterial vaginosis since I was a kid. I've had pretty constant canker sores since I was a kid and a year ago I had to have a steroid injection in my eye due to "unexplained inflammation". When I put all 3 of these symptoms together I get Behçet's Syndrome. I had strep throat 4 or 5 times in the span of 2 years when I was a kid. Enough that I'm now allergic to penicillin.

I guess my question is how do you bring it up to a doctor? What do I even say? How do I ask and what tests are there for them to give me?

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Butterflyshy88
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6 Replies
m82girlygirl profile image
m82girlygirl

There are no tests it is a symptom based diagnosis. Which makes it harder to diagnose. I would encourage you to be open with you regular doctor and ask to be referred to a rheumatologist. The rheumatologist can help you further. Don't ever hesitate for a second opinion... best of luck keep us posted, hopefully you don't have Bechets.

Liou profile image
Liou

I was referred to an immunologist specialising in behcet's who was far more helpful than the rheumatologist I was seeing who had less experience with the disease. Not a great disease to have but atleast if you know what you've got you can work towards treatment for your symptoms. Best wishes x

Butterflyshy88 profile image
Butterflyshy88 in reply toLiou

Okay so you guys all menation rheumatologist... is it crazy that my mother also has debilitating rheumatoid arthritis and has since she was 19? This doesn't just seem like a coincidence to me... I feel like the only thing I don't get is the genital ulcers. I had 2 events of them and thought it was herpes but tests came back negative. Could this still be behcets?

Dayzi profile image
Dayzi

I agree, I would just be open with your Dr (maybe bring some notes to remind you of your symptoms and dates). But, personally I had issues getting a referral to a Centre from several GPs and my rhuemy as they refused to believe it was Behcets.. I emailed straight to the Behcets centre in Birmingham with a list of all my symptoms and asked for help.. they replied and said I needed to be seen and to take their email to my GP and demand a referral.. this was a year ago and now I've been officially diagnosed with Behcets (and some other bits on top) - I also got an apology from my rhuemy for not listening to me when I first mentioned this in 2014. I'm lucky for being diagnosed so quickly (as I'm only 23), but I think it wouldn't have been so fast if I hadn't boycotted my GP/rhuemy. I would still suggest getting a good/understanding rheumatologist who can do your more regular checkups.. I'm still on the hunt for a rhuemy as even with my diagnosis I've had 2 who still refuse to believe I have it. Anyways, best of luck to you - hopefully you won't have too much trouble getting a referral! X

CathLa profile image
CathLa

For myself, it took 25 years before a doctor could tell me that I had an imminent chance of having BD. I started to have my first ulcers at the age of 6! At the age of 28-30 i got my biggest flare up, and i went to see many doctors telling them I probably have Behçet but they wanted to eliminate all the other possible diseases before. Finally, what ultimately helped to make a Behcet diagnosis, is the positive blood test for the gene called

HLA-B51.

Butterflyshy88 profile image
Butterflyshy88

Okay so you guys all menation rheumatologist... is it crazy that my mother also has debilitating rheumatoid arthritis and has since she was 19? This doesn't just seem like a coincidence to me... I feel like the only thing I don't get is the genital ulcers. I had 2 events of them and thought it was herpes but tests came back negative. Could this still be behcets?

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