Patient Comments: Behcet's Syndrome - Symptoms

What were the symptoms of your Behcet's syndrome?

Comment from: Squaw227, 45-54 Female (Patient) Published: October 28

I was diagnosed with Behcet's syndrome. I've been suffering with migraines. Recently I went to my ophthalmologist and he explained my problem. The pain is always behind my left eye, then it goes to my ears and then wraps around my head. He said what's happening is my brain is swelling behind my left eye and hence the beginning of the migraine. But, lately I have ringing in my ears and it drives me crazy!

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Comment from: Carole, 55-64 Female Published: June 04

My mother had Behcet's Syndrome. My younger sister and I were so young we don't remember how she got it or when she actually got it. She initially went blind and suffered from severe headaches. She also had ulcers in her mouth and on her genitals. It was horrible watching her suffer for the 12 years that we were aware of the disease. My mother died at the ripe old age of 53. I have three siblings and none of us has Behcet's but my older sister has primary progressive MS and I have ulcerative colitis.

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Comment from: female Davis , 35-44 Female (Patient) Published: February 07

I am 42 years old and I have suffered with behcet's since the age of 6. I had mouth sores almost always as a child. I had my first vaginal ulcer at age 12. My symptoms stopped with the pregnancy of my first child. I was 18 years old then. My symptoms returned one year after the birth of my last child. I was 32 when the symptoms returned. All four of my children have been diagnosed with behcet's syndrome. To my knowledge they are the only siblings in our country. We were all diagnosed by the doctors at pediatric hospital in Nashville,TN. I no longer have mouth sores. I still have vaginal ulcer. I suffer horrible uticaria, and have psoriasis. I have suffered with migraines my entire life, and am very photosensitive. I am unable to work because of the painful hives and painful swelling above and below my joints. I have a very good MD THAT'S been very supportive. I worked till the age of 41,' and am now afraid it is time to file for disability. This scares me. All of my children so far are striving, and I've always tried to make this disease work around them.

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Comment from: Sadie, 55-64 Female (Patient) Published: January 25

I had many the symptoms of Behcet's disease, oral and vaginal ulcers, bowel problems, joint problems, skin rashes, blood vessel problems and fatigue, as well as nervous system problems for about 20 years before I was diagnosed. By that time I was very ill but had been told I was suffering from stress. Fortunately my eyes were not affected. Now I take imuran, (aziatropine) corticosteroids as a maintenance dose of 5mg rising with an acute flare up, nexium, ideos, difene, thyroxin, and multi vitamins as well as fish oil. I feel less ill but still this illness impacts greatly on my life. It is difficult to exercise, ot do more than one thing a day, to plan events etc. I also need to have an urgent operation but the surgeons are loath to operate on account of my condition. The statistics on prognosis are not good.

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Comment from: p, 35-44 Female (Patient) Published: October 19

I have had Behcet's syndrome for the past seven years. I had mouth ulcers, headaches, vaginal ulcers, joint pain, lesions on my legs and eyes, but doctors never put them all together. At 27, I had my first stroke and lost my eyesight. I was left in a wheelchair. Then I was in the hospital for four months until everything came around six months later. I had another stroke and was in the hospital for four months again. I've had a few relapses since then, but none as bad. I am just getting better. I've even moved into my own house, and I am getting stronger every day.

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Comment from: Smudge, 35-44 Female (Patient) Published: June 22

With my Behcet's syndrome, I experienced mouth and genital ulcers, fatigue, stomach pain, weight loss, stiff neck, headaches, swollen knees, and eventually going blind. This was temporary and lasted for six months.

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Comment from: patty, 55-64 (Patient) Published: October 27

I suffered for very long time with mouth ulcers and genital ulcers headaches stiffness in my joints tiredness and my body always felt like I had the onset of the flu. It took a very long time to find out what was wrong, but eventually I was told it was Behcet's syndrome. I am treated with medication but Inever really feel well.

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