Hi all, I've been using this site for a few weeks now but never introduced myself. My story is so long and complicated sometimes I don't know where to begin. I suffer from a rare and complicated (aren't they all!) disorder of my immune system called Behcet's syndrome. I am keen to spread the word about this disorder because I am sure there are lots of people like me out there suffering for years without a diagnosis. It's so disheartening - especially when you are told constantly that you are imagining it or exaggerating. There were times when I thought I may have had a breakdown and just not realised it people had me so convinced there was nothing wrong with me.

Having Behcet's means that you have inflammation either in one part of your body or systemically. My disease is systemic. One of my docs told me that Behcet's imitates other disorders which is a good way of explaining it I guess. You have symptoms of Crohn's, rheumatoid arthritis, even ms and you have eye problems and symptoms like Sjogrens. So many things. And yet all blood works are usually normal. I only managed to get a diagnosis by seeing an oral immunologist after being referred to her by a rheumatologist who thought I may have Sjogren's. I had never heard of Behcet's. My gp had never heard of Behcet's. Even doctors who have heard of it wrongly think you can't get it unless you are from a certain ethnic background. Behcet's is much more common in Turkey and Japan.....it's known as the 'silk route' disease because of the prevalence of it in certain geographic areas.

My key symptoms are migraine that lasts for days even weeks. The pain is so debilitating. Stroke like symptoms. Neuralgia and electric shock type pain. Muscle pain. Chronic fatigue. Sore, red, scratchy eyes with floaters and double vision. Neuropathy. Chest pain from inflammation around the cartilage which feels like a heart attack sometimes but is actually costochondritis. Back pain. Pain and stiffness in my neck. A variety of rashes which come and go. A red butterfly rash on my face and neck like Lupus rash. Large red spots which sometimes come up on my legs or torso which are itchy, hot and sore. Tinnitus and hearing problems which come and go. Sometimes my hearing is very dulled. Joint pain which comes and goes too sometimes with swelling. Lots of pain in my feet, like stabbing pains. Numbness, pins and needles loss of sensation for long periods of time in different areas of my body. Ulcers in my mouth and sometimes genital area. Uncommon for me but they do occur. I have, in the past, suffered from depression though never seriously. I think I was overwhelmed at times with the sheer volume of symptoms I was getting. I salute and sympathise with anyone going through similar symptoms/undiagnosed disorders. It's very draining. I am happy to say that I currently have a great doctor and my symptoms are so much more under control because of his treatment. I almost feel like a 'normal' person when my disease is treated. It's taken a long time to get here and seeing a lot of doctors who didn't help me one bit. Not their fault in many ways.....they just kept asking me the wrong questions!

Welcome out here!we are certainly glad to have you and you will find a lot of good people and support through this group

Wow! Learned something new today--I had never heard of Behcet's...hope your struggle with it goes well for you. Sending you a hug.