Anyone out there with behcet's syndrome? I was just diagnosed.?

My doctor has just changed my previous diagnosed from intestinal bowel disease and RA to behcet's syndrome. For the last 5 years I have had several symptoms of all of the above illness. I was put on remicade (the wonder drug) which has done very little to help with any of my symptoms. Actually symptoms just became stronger. I live in the US and they say this syndrome is rare. I am Hispanic and have no one else in my family that has anything like me - that i know of - they all live in puerto rico and healthcare is different there. I have never heard of this syndrome until today - so i am just looking for anyone with it or anyone with any info on it. thanks

3 Answers

  • 1 decade ago
    Favorite Answer

    Hi. Sorry to hear about your diagnosis. I too have behcets and it is not a fun time. You said you are hispanic, can you trace your family tree back to spain? the disease is primaraly asian and people who can trace thier family back to the original silk trade route generaly find an explination as to where\how they got behcets in the first place. There is a book out there that helped me alot called " The Essential Guide to Behcet's" By Joanne Zeis It is very technical but it has also been abig help to my docs. Which state are you in? I live in Alaska and finding a doc up here was very challenging so if you are in Alaska to I would be willing to tell you who the docs up here are that know how to treat BD. Hope I have helped.

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  • Shelby
    Lv 4
    1 decade ago

    I think you should come to Turkey.Because a proffessor discovered this illness and named it "behçet hastalığı".

    It is like rheumatism, I mean it effects to human's articulations.You feel sorrow there.And you may have some wound in your body, especially in your mouth.

    But these symptoms losts for a while, you think you are too healthy, and after 2 weeks or months, you have same problems...

    In Turkey, there are good professors who can heal this desease, at least control it.You should go to university's research clinics.

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  • pilla
    Lv 4
    4 years ago

    This is a ailment that's characterised through irritation of the blood vessels. I could assume that the nurse you spoke with was once worried approximately being equipped to get the needle into the vein, and in addition considering if that movement could aggravate your already compromised veins.

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