Patient Comments: Behcet's Syndrome - Experience

Question:

Please discuss your experience with Behcet's syndrome. Submit Your Comment

Comment from: Rhonda, 55-64 Female (Patient) Published: April 21

I was diagnosed with Behcet’s syndrome. I has severe genital sores and mouth sores. It also seems to affect my joints badly and I've started having hand tremors. I would like to know if any foods are better for you and which foods you should avoid. I am a 56 year old disabled housewife. I would appreciate any input that anyone has.

Comment from: Paton.babyface.clair, 35-44 Female (Caregiver) Published: October 03

When I got diagnosed Behcet's syndrome I had not long left school. I got so many scars on my legs through very big and deep ulcers and suffer now and again with my knees, fingers and lower back. I tested out cyclosporine from America, and it worked wonders. I got told it makes me infertile, I have got 2 kids, and for the past 25 years I have been doing ok. Now I think I am having a flare up, this time popped blisters on 2 fingers and my memory and eyesight are shocking. I do know we all share this illness.

Comment from: Brian, 25-34 Male (Caregiver) Published: June 04

My son was diagnosed with Behcet’s syndrome at age 30. Within 6 months he became paralyzed below the waist. In 3 years he became a quadriplegic. We went to many hospitals. Loss of bodily functions was the hardest thing for me to watch. He passed away March 14th, 2017. Stay in front of the disease and do all that you can to be strong.

Comment from: Behcets Mom CO, 19-24 Female (Caregiver) Published: May 01

My 22 year old daughter has had Behcet’s syndrome since she was about 13. But now that I think about it she had oral ulcers when she was 5 and has complained of joint pain her whole life. I wonder if anyone has had any luck with topical treatment of genital ulcers. That is her primary symptom. We would love to get her off Humira which is killing off her white blood cells.

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.

Comment from: Shakti, 35-44 Female (Patient) Published: May 11

After many years of agony and many hospitals thinking different things and diagnosing me with a million things, it was Behcet’s syndrome. It has affected me in many ways by now at the age of 36, especially due to stress, trauma, and environmental factors. I suggest natural medicines first; the big pharma stuff kills in many ways and Behcet’s is hard as it is. After a while no medicine really cures the disease which ultimately is a mind, body, soul issue. Try adding a natural approach such as Ayurvedic, functional, oriental, and/or integrative medicine. Look up plants and natural things such as vitamin D and turmeric supplements.

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.

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.

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.

Comment from: Lee123, 35-44 Female (Patient) Published: February 28

My mother has Behcet’s I have Behcet’s and my sister as well, Behcet’s needs rest, not extreme hot weather and we drink Advil CS that works wonders. You must learn your body"s signs, if we feel the symptoms popping up, we either rest or take Advil CS pills.

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