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Behçet's UK
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Hi all,

I can't say I have behcet's because this is something that's is hard to diagnose, but ever since I experienced 3 out of the numerous amount of symptoms it involves I have a feeling that it is. It's very hard for me to read everybody's post on how you have to deal with this, because I know it can be very difficult for you, I only dealt with the sypmtoms once. When I was 18 right before prom in high school I had noticed a very odd looking scab in my belly button it looked like it was infected - definitely did not look good at all. I thought maybe it was just a rash so I didn't pay to much attention, but then the next day I just did not feel good at all I started to feel very week and tired and I started getting sores EVERYWHERE in my mouth. literally clusters of them under my toungue, on the inside of my cheeks, on the roof of my mouth, every where possible. I couldn't eat/drink for about a week. It was so hard for me to drink water! After the sores in my mouth came, I started feeling pain in my joints and I started getting LARGE red bumps on my legs they felt so sensitive too. they were like baseballs on my ankles, and my knee caps I could barely walk down my stairs- my mom had to carry me. At that point my mom had decided to take me to the hospital - when I got there none of the doctors or nurses could figure out what I had.. They had mentioned text book pictures that related to behcet's but at that moment I only had 2 of the numerous amount of symptoms that can be carried. So it wasn't thought of twice. After that they basically just sent me home and I went to my doctor the next day and he said I had a bacterial infection. I started antibiotics and after I started that is when my genital ulcers had occurred. I ended up being treated for something I didn't have and ended up back in the hospital. Since I had been in soo much pain for a week and couldn't eat/drink anything one of the immunologist gave me sterioids to take. As soon as I took the steroids all of my swelling went down and I was feeling better within hours. I went to see the immunologist two days later and he had mentioned he highly believes it was behcet's, but could not diagnose me because we weren't able to take any samples of the genital ulcers since they had disappeared from the steroids. That's my story! It will soon be 3 years since I had the break out and haven't gotten it again thank gosh! I do have steroids on side the doctor provided me with just incase it gets intense again. I always find myself searching the web every now and then since it happened hoping to see any new information or discoveries about this topic but it still seems to be a never ending study. I honestly thought that week was the last week of my life. Stay strong everybody I hope one day we can discover some sort of STRONG enough treatment or even cure!


2 Replies

Hi Rebecca, Glad you have found the site, as since it changed recently we have all suffered a lot of gremlins and sadly lost quite a few buddies from all over the world who cannot gain access to the site anymore. Good News is it is getting better and some people like myself have managed to find a a way back in........so hang in as the techies are working very hard to get the site back to what it was and even better!!!!!!

I read your post with interest and it does sound like Behcets. The problem is like all autoimmune diseases it has many, many symptoms involving many different fields of medicine and it affects us all differently. I have suffered with the disease for 28 years now and back then it took 12 years for me to get a diagnosis and even now some Specialists and GPs still seem to doubt the diagnosis but all agree i definitely have something and the closed is BD.

Having said this I am one of the lucky ones as although I suffer the symptoms (when I am in a Flare) I do not seem to suffer the degeneration as much as others for the length of time I have had this. Its like I said we all suffer differently and our bodies react differently to the meds. For me, I hold of meds as long as possible and then take them agressively, regardless of side effects (where possible) AND IT WORKS FOR ME. I had the first 12 years of constant BD then found the best meds for me which I continued on for 6 years shen I finally came off them due to stomach bleed. During this time and for 3 years after I had an almost symptom free time. Then 4 years ago things started to get bad and in different parts of the body but the meds give some relief and I refuse to let this disease take over my life, so far not back on any aggressive meds and the Flare seems to be degressing.

Basically this illness began when I was about 34 yrs old and I still managed to work on and off, have 2 more children, divorce (due to BD, Hubby couldnt cope) so brought children up mostly on my own, met someone and remarried, now retired, children grown up and at 62 yrears old aside from the occassional flares I can say I am really happy with my life. So we just have to learn to cope with the cards dealt to us.....there is always someone worse off, believe me when I say all those years ago I never thought I could get through it all but I did, so anyone can.

Hope this gives you a better insight into this or any autoimmune disease and lifts your spirits that there is hope and one day maybe really good treatments or even a cure.

Take care

Hugs and Smiles



Hi Rebecca, sorry for the delay in my reply but i felt I had to as your symptoms sound so similar to mine all those years ago I was lucky and after 3 years of feeling absolutely rotten I was referred to a brilliant Rhuematologist and she diagnosed Behcets and I started on steroid treatment which worked very well and 16 years on I still get some symptoms mainly mouth ulcers and fatigue. I also still incur the phrase of "probable Behcets" with the odd medical professional but I always think to myself I don't care what you do or don't think I have wrong with me all I know is the treament and medication I take daily keeps my symptoms at bay so it's doing something...hugs and I hope you get an answer soon and start to feel better...xxx


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