I’m still struggling and waiting on symptoms so I can get a diagnosis. I have my second large ulcer on the roof of my mouth now. This one hurts and looks like a gash. My blood work and testing reveals nothing but HL B27 positive. My right eye was diagnosed with retinal vasculitis and branch retinal artery occlusion in May of 2016. It is healing well now without treatment. At that time I had not had oral ulcers but had one time had genital ulcers. I’ve had dishydrotic eczema for 3 years on my feet though. Then in August 2017 I had a large non-healing aprhous ulcer on the roof of my mouth. Now I have another onthe opposite side. I’ve also had adult cystic acne. Large painful nodules on my face and in the pubic area. The two on my public area left scars and had purple centers. I have a host of painful symptoms and fatigue etc too. I’m quite literally sick with one thing or another all the time. Any ideas of potential diseases that fit or similar experiences that anyone knows of? I’m at a loss for what to do next.
2nd mouth ulcer now. Started w retinal vasculi... - Behçet's UK
2nd mouth ulcer now. Started w retinal vasculitis and BRAO 1&1/2 years ago
Hi LostOH
I am so sorry you have been dealing with a lot. Have you connected with a good rheumatologist and PCP? Sounds like BD, but in the rheum world so many things overlap.
Okay, first thing keep talk with us 
support is number one.
Making you comfortable as possible is also key. What sort of other info are you looking for?
Keep us posted!
Hugs
Ash
Thank you Ash. I have a rheumatologist but I’m hesitant to return until I get a third ulcer. I’ve been put through so many tests at my own cost to no no avail already. I guess I’m wanting to know if people with BD think this could be BD before I go through anything else. Both sores are on the roof of my mouth. They are large and take 3-4 weeks to heal. I am a smoker and from what I’ve read this keeps many mouth sores away. My teeth are bad shape too I’m going to a dentist today.
Living life sick without treatment or a diagnosis is too difficult. I’m at the point of needing disability but I don’t even know what for. I’m 46 years old. I’m tired of being sick.
hey there- baltimore md here,.
behcets gets diagnosed off the main symptoms and then minor symptoms. im sure youve been to the abda website.
so all in all, you test negative for everything... lupus, std's crohns, etc. BD can be diagnosed off the main 3-uveitis, oral and genital ulcers. everyone has a different combo, and not everyone has it in the same places. i myself only have the oral and genital, and they dont always happen together.
Have you had your ulcer biopsied? that can also rule out other conditions like pemphigus vulgaris- which look really similar to BD, except that the ulcers/ blisters actually have a certain skin cell to them. I had my ulcer biopsied and it came back negative for bacterial and viral properties. it was just inflamed tissue.
i understand and know your frustration well. BEEN THERE BOO- so here's a few things in the mean time to help get you by and apply to any disease in general:
1: drink water. only water. cut soda and juice.
2. get all the sleep. if its 15 hours, so be it. if its a nap every two hours, so be it. sleep is your friend.
3.change your diet. during my worst flare, i had thrush. ultimately after no medications worked for months, i decided to go down the homeopathic hippy dippy route (i am a scientist btw-with a ton of knowledge with pharms) and i did a candida diet. candida diet is essentially zero carb. ketogenic diet (which I do now) is almost the same thing. This was the spark that started to heal my body. I felt a difference in 10 days. so what does this mean? eat meat or fish, veggies, fats. no breads, no pastas, no fruits (add those back in later). all in all, MINIMAL CARBS (veggies are your carb). put your body in ketogenic state- its incredibly antiflammatory. every time i flare, it snaps me out within a day or two. click on my name for my other posts- as ive posted some meal ideas. im also on IG @bitterbiologist where i post all low carb, keto meals. theres been a handful of others on here who have made the diet changes and its worked out well for them- less flares, ulcers healing etc. i myself, every since discovering this way of eating, which is easy AF, you eat regular food but leave the bread or rice or potato.(meat and veggies. add butter. add cheese.) i dont get sick anymore. im actually stopping my immunosuppressant next year. I used to be on 15 diff meds. over 50 ulcers in my mouth, meningitis, arthritis, miserable. you name it. im good now. like im fucking good now. i wish someone would have told m years ago-heres a simple fix and its not a medicine.
try it. youve got nothing to lose. keep us posted with any tests, and questions. we are here. we know. its one day at a time-you wont feel this way forever-i promise XOXO
Thank you. I’m willing to try anything. One more mouth ulcer in the next 7 months and I meet the criteria for diagnosis. My first ulcer was biopsies to rule out cancer. I haven’t read the full lab report just that it wasn’t cancer or anything to worry about.
Sleep is something I definitely do. 12 hours last night and I’m ready for a nap now. But maintaining a marriage and a full time job while sleeping so much is near impossible.
Just a quick update. I went to the dentist. My gums are in great shape but I have severe dry mouth. I literally made no saliva during the 2 hour oral exam. It’s robbing my enamel. Now I have sores on the corners of my mouth again. This has been reoccurrent for a couple of years but they were healed up.
Is it common in Behçets to have severe xerostomia?(dry mouth) and or the sores at the corners of the mouth?
The dentist feels that the mouth ulcers and dry mouth are autoimmune related too. She could see the scarring from the previous ulcers. She gave me a script for Kenalog to apply on the ulcers the next time I get them.
Has anyone used this before? It’s quite expensive. She said it will offer temporary relief.
I’ve found that taking Vit B2 (Riboflavin) helps the sores at the corners of the mouth... not as part of a multi B just the B2
Thank you for the tip. Are these common with Behcet? The sores on the corners of the mouth.
Tongue Ulcers? 
Diagnosed last month
Possible new diagnosis, thoughts?
Ulceration in pregnancy
Suspected Behcet's
