Behcet's Syndrome Society
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Hi everyone, it me again greg,

I so glad to have found this. I have really been living alone with this all my life. Well my adult life anyway that is. So many people that have not believed me. All the negative testing over the years. I mean even my own parents were skeptical. My dad still is. I've been accused of being a hypochondriac. It's all in my head they say. Anybody else get that. Now I'm having Nero problem's it's getting worse and it's hard to find a doctor in the US that has even heard of behcets. And now I got to go tell someone I think I have something like minigitis and or encephalitis, but all test will be normal. That's crazy. Well, I guess we go anyway. Dose anyone have eye issues like me and if so what's it like for u? As anyone gone blind yet I think I will eventually the way my eye ache all the time and the lights, I just want to b in darkness always.

It feels good knowing I'm talking to people who are there with me.

PLUR- peace, love,unity,respect


8 Replies

Please get on the ABDA site and hopefully locate recommended doctors your way? I hope you've been seen by an opthamologist? I see one every six months and get optic nerve scans yearly,etc.

Are you on anything medication wise? Prednisone?

I know exactly where you are coming from. People believe and understand what they can see, with many of us the outside doesn't match the inside. Do you hear things like,"but you look ok?",etc etc....

Please note: lock your posts to community only instead of all the many'll get more response😉



Hi ,

I think the abda cost money to join but I've gleaned some off of it. I gone to eye doctors but I have resently moved to a different state and haven't found one yet. Need one though, cause I have broken blood vessels in my eyes.

When it comes to prednisone lve only been given that for sores in my colon.

I remember when I was 20 and all my joints hurt, but with no or very little swelling and no fever, left the doctor at a loss as what to do. My mom was like ,u just attention there's nothing wrong with u. If there was the doctor would find something. She then refused to help me anymore. Then in 02 when my first multi-system flair happened and I was diagnosed she come around with support. She dead now but we were really close by then.

Thx for reply nice to hear from someone who understand.



Check for your area specifically , and maybe you could call the offices of those that interest you to see if they are familiar BD:)

You can also look them up by specialty in your area.

Best of luck to you!

Take care:)



Thanks, I'll do just that. I'll b checking with heath services tomorrow. I really have this keep on keeping on attatude. I've gone so long with good heath I've been in a state of denial that my behcets is catching up with me. I think too that if I wasn't trying to read about behcets I wouldn't b here nor would I know about nbd. Everything I'm reading is answering a lot of questions about my symptoms that the doctors had on answer for. I'll post again tomorrow after I'm done.

Plur g

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I did get that from all the DRS before August when my DR finally from the advice from my natural DR took all my symptoms to heart and really now he is on top of all my medical issues Group health Bellevue WA


yes I hear ya on all test normal or borderline and dr's looking at you like you are crazy all DR'S except my natural path DR she finally helped convince my reg DR that I had Behcets she did the skin prick test and tons of other tests throught the years for SIBO and auto immune disorders she also directed me to a acupuncture DR who helped me with the horrible sensitivities to everything including my husbands fluids caused me to have anaphylactic and pass out times I honestly believe that all this stems from over accumulation of histimine that I suffer from daily and have for the past twelve years but just now got a allergist to believe me even though my tryptase blood test is only one point up you will find a lot of information that I will bet you will feel like you are reading your own story look up histamine and fibromyalgia I emailed them and told them I believe Behcets is also connected in the same manor to mastocytosis over accumulation of histamine in my body I am thankful I found this sight because I myself felt like there had to be somone else who suffers with this horrible disorder I'm sorry there are but thankful to know I'm not alone take care treat yourself to a warm Epsom salt lavender bath this helps all body relese toxins and gives relief to body pain


Hi,I in Skagit

Thanks for the research. Never heard that. But then the mayo clinic questions if it's a true auto-ammune disorder. I've read that behcet's might b linked to the same bacteria that cause Valley fever. Which comes from dirt. The silk road being an area where it's in the dirt. Who really knows.

I take supplements turmeric,ginger,magnesium, iron... plus I use lavender essential oil on my lymph nodes. Nothing here is a cure, but they help keep me in remission enough to live without methotrexate and imerun and lodean and colazal and prednisone. It just goes on. New ones to come. I think u have to b real about it but at the same time and more importantly u have to keep on keeping on. Exercise and diet play a big part in our health. U know don't eat food that cause inflammation. Our blood health should b on top of list. U know.

Anyhoo, plural g


Hey Greg.

I am currently having vision problems in one eye. I'm hoping the steroids and other meds they are throwing at me will help, but at the moment my vision is still the same.

It's a difficult disease. Harder when doubted by loved ones. Went through similar myself, then was diagnosed with MS before finally getting the diagnosis of Beçhets.

Make sure you go somewhere soon if you feel you are flaring up.

Wishing you all the best x

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