Yes, I've been diagnosed in the last year. I am currently recovering from a stroke caused by neuro Behcets and trying to learn more about how it's affecting me. I am NON-typical in that I am a 47 year old Ameican White female with symptons that started about 8 years ago with iritis, lymph node & joint pain. I didn't have any mouth lesions (they were more like brief blisters) until last fall. That was the clue that finally brought a conclusion to my mystery disease. Diane
Have your Doctors considered Neuro-Behcets as a diagnosis? It is quite rare and usually is found in Middle Eastern people, along the "old silk Highway", But Americans and English people get it too. I am very white skinned and I have Neuro-Behcets. Do you have a history of Oral Canker sores OR Genital Ulcers? (in Females on the inside of the Labia. On Males, on the Scrotum and some times the Penis.) Neuro-behcets can cause very, very, severe headaches and Back Aches. Even "Aseptic Meningitis", and Gastro-Intestinal Ulcers. And many other skin problems. The Neuro-Behcets Brain Lesions usually appear in the deep white matter of the FRONTAL LOBE of the brain. Have you had an M.R.I with and without contrast material yet? If not you should ask your doctor to perform one. Neuro-Behcets can cause Frontal Lobe damage and Mental Problems - all the way to "Dementia". Persons with Neuro-Behcets can be, "Mentally and/or Physically Dependent on others" before they die. There is no test FOR it. Ruling out M.S., Rhumatoid Arthritis , Lupus, etc., are some of the first steps to a diagnosis of Behcets or Neuro-Behcets. The Bla-52 gene test, may show up as a possible Positive indicator. Also, a "Positive Pathergy" Test, is positive in about 50% of Behcets patients. (I am very "reactive" when Blood is drawn for Lab Tests, about 24-48 hour later, I have large red "welt" like an ant bite , where ever the needle punctured my skin.) This is when some one reacts with small to large red bumps when "Pricked" with sterile needles on the inside of the fore arm. I suggest you go to the American Behcets Society website and see if all, or some of the symptoms match up with your symptoms. (When I went to the site - There I was! All of those symptoms were mine. Best of Luck to you, email@example.com
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