Patient Comments: Behcet's Syndrome - Experience

Please discuss your experience with Behcet's syndrome.

Comment from: bearnellie, 65-74 Female (Caregiver) Published: September 01

My mother has Behcet's syndrome and she is currently in the hospital. She has one gastrologist who says she needs a liver transplant and another that says she does not. She has had loss of appetite, weight loss, massive abdominal pain and swelling. She just had 6 liters of fluid removed from her abdomen. We live in Oregon and there are no doctors here who have experience with it.

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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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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: Eve, 45-54 Female (Patient) Published: April 14

I"ve been diagnosed with Behcet's syndrome 3 years ago. I was referred to the eye hospital because of a very severe anterior uveitis in both eyes. I was very lucky to be caught in time and started treatment right away, I was on 25 mg of methotrexate for approximately 2 years but first was on prednisolone eye drop for 6 months. Today I'm doing fine and my eyes are back to what it was, I do have to wear glasses but hey! After all I'm going on 53 so... Just to let everyone know that if you or someone you know is experiencing some sort of blurred vision and pressure in their eyes please go see quickly your eye doctor, because if not treated and you have uveitis you'll go blind.

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Comment from: susanrhona, 55-64 Female (Patient) Published: May 07

When I was diagnosed at age 21 with Behcet's syndrome there was only one other person who had it in my state. Most doctors had never heard of it, I would have to tell the doctor how to treat me. There was only one page of information on behest.

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Behcet's Syndrome - Symptoms Question: What were the symptoms of your Behcet's syndrome?
Behcet's Syndrome - Effective Treatments Question: What kinds of treatment, including medication, have you found effective for Behcet's syndrome?
Behcet's Syndrome - Diagnosis Question: How was the diagnosis of your Behcet's syndrome made?

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