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Behçet's UK
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My name is Vickie,

I am currently working with Dr on diagnosis. I tested positive for Behcets. I have been reading up on the disease. I'm 45 and had my first hearing loss when I was in high school. 3 years ago I had another significant loss in hearing. The hearing Dr did gene testing and found nothing. I finally was able to get my primary to fax medical records to reumatologist. He has been treating me since August. I go Monday for final diagnosis.

3 Replies

Hi Vicky, I was diagnosed in June this year age 49. I lost the sight in one eye in Dec last year. Blood test was negative but I have been suffering other side effects for years. At least now you will be able to get the right treatment. You don't say where you live. It was pure luck I found a consultant that recognised behcets. It was not the fault of the others I saw as I am not an obvious case. The drugs I am on, mainly Azathioprine, are now working. I have had no flares for the last few months now and my sight is stable. Keep in touch, I find this site very helpful and reassuring to know I am not alone with this. Good luck.

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Hi Vickie, so sorry for your problems and hopefully soon you will have an answer. You say you had a positive test result for BD but there is no positive test for this disease currently. People are diagnosed by symptoms at least 3 out of 5 of the many. I know it's not nice to suffer without answers but for many of us it took at least 10 years to get a diagnosis. Nowadays, there is more known about BD and much more research. I wish you well whatever the the doctors say.


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I should say i tested positive for the HLA B-51 antigen. The article I read was on Hearing and Vestibular Disturbances inBehcet's Syndrome. I had my first issues with hearing around 9th grade. Then 3 years ago another huge loss. I have had lesions on scalp and in nasal passages. Now I am having severe neck pain and headaches. I have been trying to figure this out for sometime. Have gone to primary doctor and received attitude. Rumitologist is first to make sense of symtoms. He has also spoke with hearing doctor.


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