Patient Comments: Behcet's Syndrome - Symptoms

What were the symptoms of your Behcet's syndrome?

Comment from: wheezer, 35-44 Female (Patient) Published: August 17

I have Bechets' syndrome with uveitis, oral and genital ulcers and protein C deficiency hypercoagulable state and lower extremity hyperesthesia. This is very painful. I have to go to the doctor 3 to 4 times a week because of my condition. I have been hospitalized so much until I have lost count. I have been paralyzed and I have had a stroke.

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Comment from: fellow sufferer, 35-44 Female (Patient) Published: August 09

I was diagnosed 16 years ago after several years (from the age of 12) of being ill with recurrent genital ulcers and suffered severe joint pain for years but the two were put down as seperate medical problems until it attacked or appeared in my bowels then it was considered as a behcet's case. At 35 I now have a good understanding of how my symptoms work and how to manage them but mainly through one extremely understanding GP who pushed my case and helped me research the subject.

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Comment from: katty, 25-34 Female (Patient) Published: June 04

After spending 25 weeks straight in hospital they diagnosed me with Behcets, I suffer from mouth and Genital Ulcers, joint swelling and server pain, rashes, skin nodule's, and skin ulcers. This has now been going on for 19 months and no remission. I'm frustrated, but hopeful a mix of medications will work soon. I'm 28 year with 3 daughters they are all being tested for it now.

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Comment from: Cooly, 35-44 Male (Patient) Published: December 02

I was diagnosed of having BD about a year ago. Prior to that l was attending a dental clinic to help the recurrent ulcers in my mouth. Later, l have to see a specialist who told me there was more to that than a dental problem. I am currently on 10mg prednisolone. I feel better now but the recurrence after a brief remission is a real bother. I ache in the eye and the mouth ulcer is threatening to be back. Hope l can get better.

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Comment from: AuntS, 25-34 Female (Caregiver) Published: July 12

Our nephew was diagnosed about 4 years ago. His ulcers were so bad in his mouth and gentials, and he became blind. He suffered a lot in the last 2 years and this last out break was really really bad. He died July 6 at the young age of 28. We will miss you and loved you so very much.

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Comment from: Colorado, 55-64 Female (Patient) Published: July 05

I was diagnosed with Behcets a year ago, after suffering from the red blisters on my thighs, that ulcerated and would not heal. I was also extremely sick, headaches, dizziness, and unable to stay awake for more than a few hours at a time. I have always been very physically active, but had no energy at all, I felt at one point that I was dying. I was fortunate that at this time I was actually living in the middle east, and went to a doctor who is familiar with Bahchets and its treatment. I was put on a large dose (shot) of penicillin and colchitrane for 4 months, at which time the disease went into remission. Unfortunately, it is now back, and I am no longer in the middle east. I now have some of the sores or blisters around my mouth, outside and inside and my joints are very sore.

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Comment from: Nebraska, 19-24 Male (Caregiver) Published: March 18

Our son has Behcet's Syndrome, which we already knew but had to go the the emergency room because he was throwing up blood. After being scoped he has a bleeding ucler.

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Comment from: Stevo, 35-44 Male (Patient) Published: March 15

I was diagnosed with Behcet's Syndrome about 2 months ago. Had 3 horrible episodes and having #4 right now. Awful sores in my mouth that would bleed for over a week permitting me to only drink smoothies. I would also get an awful rash which would go away after 2 weeks. Always got the outbreaks when I was sick or under the weather. Last one was so bad went to Emergency Room. Taking Colchicine now but obviously that didn't work. I have a team of doctors looking into this problem for me but honestly it simply feels like I'm on my own ( although I know this isn't true). Anyway, going to see the Dr. today and hopefully he'll give me some good news. I am frustrated and tired.

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

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