Behcet's Syndrome - Experience

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What is Behçet's syndrome?

Behçet's syndrome is classically characterized as a triad of symptoms that include recurring crops of mouth ulcers (aphthous ulcers, canker sores), genital ulcers, and inflammation of a specialized area around the pupil of the eye termed the uvea. The inflammation of the area of the eye that is around the pupil is called uveitis. Behçet's syndrome is also sometimes referred to as Behçet's disease.

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Comment from: arl22, 25-34 Female (Patient) Published: February 10

I was diagnosed with Behcet's when I was 13. At that time, I got really sick and noticed my vaginal area started to hurt a lot. As a shy 7th grader, I was so embarrassed and didn't want to tell anyone, so I let it go until a genital ulcer grew to an alarming size and I was getting sicker. I went to the nurse at school who called my mom to take me to a doctor. When I went to the family doctor, they told my mom I needed to go the emergency room (ER) immediately. At the hospital, I had emergency surgery to remove the quickly spreading ulcer. From the school nurse to the hospital, I was asked several times if I was sexually active, which I definitely was not, ruling out any kind of STD (sexually transmitted disease). After the surgery, the surgeon said she had done some research (she had never heard of Behcet's) and found the only explanation of my symptoms was Behcet's. My problem now though, is that I have never had another genital ulcer since then, very little mouth ulcers, no skin lesions except for acne, and I don't think I have eye issues. So I'm not sure if I have Behcet's. Lately and over the last couple years, I have had some multiple sclerosis like symptoms such as weakness, tiredness, incontinence, shaking, etc. I got a ton of blood tests and a CT scan and everything came back normal. So now I don't know what I have and I also don't know whether or not I have Behcet's. I have had bad headaches behind my left eye since I was little, but didn't know if that was related to Behcet's until I read some of these posts. I would love any advice or opinions!

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Comment from: vacation, 35-44 Female (Patient) Published: November 16

I notice that I have also had similar Behcet's syndrome symptoms. Almost 20 years ago I had a vaginal ulcer, no one knew why, no STDs. Then nothing until now. I have also had migraines for the past 20 years, with light sensitivity. I had zero mouth ulcers until 3 months ago, and now I have had at least 5. I have tremors in hands and lots of cramps and spasms everywhere. I was not diagnosed until 3 months ago. The hard part is no exact blood test, Behcet's seems to be a tricky little tyrant. I am also having uncontrolled symptoms. Hope this helps.

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