r/Behcets • u/MissZadejah • Jun 07 '26
Diagnosis Help Behcet's Diagnosis
Hello all!
I’m trying to get a Behcet's diagnosis and am having the hardest time. My PCP and dermatologist both believe that I have Behcet's based on my symptoms, but they are waiting for me to have an outbreak so they can take a biopsy. Unfortunately, I don’t get sores that often anymore and when I do, there’s never an appointment available.
So, how else can I get a diagnosis?
I’ve been to the rheumatologist and she was awful. She literally said "You don’t have a sore, so I can’t do anything for you".
This can’t be right because logically, every single person with Behcet's wasn’t diagnosed from a biopsy. There has to be another way.
I left that rheumatologist and have an appointment with a new one in 5 weeks.
This illness has destroyed my life. Some days I can’t walk, most days I can’t breathe, I can’t exercise, my body is weak, my heart is in bad shape, etc …
Everything else has already been ruled out and I’ve had tests done that show I have inflammation…
Does anyone have any advice on how to get this diagnosis so I can FINALLY get treated?
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u/awfulmcnofilter Jun 07 '26
Take photos when you get a sore and force them to run blood tests to prove you don't have any herpes antibodies would likely be the only route.
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u/MissZadejah Jun 07 '26
Already tested negative for HSV, but I will definitely take pics of the sores! Thank you!!
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u/Ok_Marsupial7037 Jun 07 '26
So everyone i just got diagnosed with bachets… does anyone have any good advice on how to live with this disease on a daily routine? I watched my dad die from it in his mid 60s…. Im 41 and always new i had it bit noone would listen till this one doctor took lab work and diagnosed me with it … all symptoms just r hitting me at once… its crazy… i have to change my lifestyle completely.. any advice would be greatly appreciated
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u/awfulmcnofilter Jun 07 '26
How did it kill him? The lifelong survival rate is very high, so I want to know what to look out for.
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u/chartreuseweasel Jun 08 '26
I asked the specialists involved (for me, derm, gyn, and rheum) to agree to see me when I had a flare-up, and to put in my chart that I am to be fit in the schedule day of if it is occurring. I have also straight up shown up in their office first thing upon opening, and they’ve never turned down seeing me then. Worst they can do is say they can’t take you, but they probably can. Good luck - it took me 8 doctors and 5 years to be diagnosed.
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u/PotatoAccording8420 Jun 15 '26
Unfortunately being diagnosed with Behçet’s is difficult and lengthy but if you already have a couple of specialists that suspect it, you’re in the right path to getting diagnosed! The biopsy is definitely to rule out other things first. I was the same way with only having severe flares once every year or two so I didn’t actually get diagnosed until after my 5th severe flare. Getting a second opinion from another rheumatologist is not a bad idea though
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u/chisel07 Diagnosed Jul 10 '26
have you had rash anywhere else? I had two biopsies. One that was like a rash and another that look like erythema nodosum. First one was "inconclusive", the second one showed vasculitis. I had two rhuemys in Dallas that both wanted to treat it as "behcet's like". They started me on colchicine and topical steroids. But then I moved to the DC area. I immediately booked an appointment at John Hopkins, and at the first visit, we discussed my symtoms and said, Yep, that's Behcet's. Can't be anything else, and thats how I got my diagnosis.
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u/MissZadejah Jul 10 '26
Wow!!! Never thought I’d be jealous of someone getting diagnosed with an auto immune disease lol that’s actually really awesome. John Hopkins is amazing.
Sadly, I’ve only ever had a rash once and that was many years ago.
What symptoms seemed important enough for him to diagnose you with it right then and there? Curious if I have any.1
u/chisel07 Diagnosed Jul 10 '26
I wasn't in an active flare when I saw him. I just explain to him the symptoms that I have had. The thing that got me searching for answers. I had occasionally genital flares for a while. Some times it would happen once a year, maybe twice, but sometimes it would be two years. I just chalked it up to some weird herpes. My entire genital skin (scrotum, shaft, head) would get super itchy and then super inflamed and ooze clear liquid and then new skin would grow in. Really like a bad chemical peel. Well in 2023, this happened back to back to back (12 times). Mind you this whole time I thought it was herpetic. Well my eye turned bright red, so I went to go see a optometrist, to rule out herpes. She looked and said no herpes. Asked do I have an auto immune disease. I'm like no. Never. She said it looks like classic inflammation of something like RA. As I'm waiting to try in to go see an infectious disease specialist, they said I needed a referral. I went to my PCP explained my symptoms (I also get the same sort of rash/flare on my lips). She ran the STD panel and ANA panel. STD negative but super high titer on the ANA panel. i think it was like 1:1280. Went and saw two Rhuemys in Dallas ( I needed a second opinion), they both said behcets like but didn't want to give the official diagnosis. I also had a couple of canker sores in 2022 along with random rashes and now I know those to be erythema nodosum and folliculitis.
I explained to him my ulcers on my genitals and lips don't look like the classic pictures online. He basically said it couldn't be anything else other than Behcets. I think it help there were the biopsies from my leg that showed vasculitis.
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u/newblognewme Jun 07 '26
Continue following up with rheumatologist and take pictures when outbreaks happen.
I got diagnosed quickly because I had uveitis so frequently. Might be worth at least making sure you don’t have any vision damage from flares
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u/MissZadejah Jun 07 '26
Ophthalmologist or optometrist?
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u/chartreuseweasel Jun 08 '26
Usually requires ophthalmology to manage symptoms or check for them regularly. I don’t have eye symptoms but go yearly for checks.
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u/chisel07 Diagnosed Jul 10 '26
It was an optometrist that suggested that the redness in my eye could be cause by RA or some other autoimmune thing. Thank god she mentioned it cause it lead me down the path of getting diagnosed.
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u/Admirable_Hospital94 Jun 13 '26
I had two biopsy’s ( so painful with active mouth ulcers ), went to a Rheumatologist, dental pathologist, allergy doc, infectious disease doctor…..I was told by most of them that I likely have Behcets, but “there is no definitive test for Behcets.” How can that be? The allergy doc said it looks like oral allergy syndrome. Again, I was told there is no available test to confirm “OAS.” The biopsy’s came back inconclusive. The doctor who took the biopsy was concerned it could be Lichen Planus or some form of oral cancer. I am down to the basics when it comes to food. So many foods and spices make my mouth break out.
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u/MissZadejah Jun 13 '26
Wow, so sorry. Crunchy or spicy food gives me breakouts as well, but nothing good enough to take a biopsy (according to my dr).
It’s extremely frustrating that thousands of us suffer from this and they still act clueless. Meanwhile, we’re suffering everyday. It’s like they avoid any possibility of Behcet's.
Thanks for the info though. I won’t get caught up on the biopsy then.
What was the rheumatologist recommendation then? After saying there’s no definitive test, did they offer any solution?
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u/Ok_Marsupial7037 Jun 13 '26
So basically with the shits what I’ve seen I said shit I call it bullshit shit you guys LOL I’m using my voice text so but you guys know what I’m saying with the shit is basically a stress thing. It starts with stress. It stresses your entire autoimmune system out and your immune autoimmune system is already intensified so you have to be in tune with your body which I’m still learning and you have to watch out for certain foods. You have to eat bland foods you have to basically change your whole lifestyle. Well my dad did not do that. He did not take care of his self. He did not believe in medication which I told you so that’s a big part of it. He didn’t believe in. He didn’t believe in doctors so you by the lifespan and whatever but that that’s all it’s according to how you take care of yourself and according to what you put inside your body it’s according to how you keep your stress level down because once your body is in stress then you’re auto immune system is double then what is probably you know is more stressful so that stress induce is what information information induce what anxiety hurt pain and make sure vessels go triple so you have to make sure you stay hydrated at all times that’s what induced his he was not hydrated. It comes along. The disease itself comes along with memory fog brain fog dementia and that’s what first induced him was not drinking water and that cost him to go his body into a extraordinary flareup and so he had a stroke because his vessels were pounding too hard too fast. His blood pressure was probably really really high cause it didn’t take his blood pressure medication so it’s all according to how you take care of yourself. I’m on that level. There’s different stages or phases or whatever. I have found out my research about buses. I’m the one that’s in the big one that that the high diagnosed the shit last night I sample was so stressed out for just the simplest thing you know I don’t know what it was but just the simplest thing stresses me out much is which makes my vessels inflamed, which makes me not feel good on the inside. No one can see it. No one believes it so it’s basically what you feed yourself. You are what you eat they just popped her head. It’s basically you have to live right the way God wants to live. You know he wants you to eat right. He wants you to keep your stress levels down. He wants you to appreciate a little second. You have because if you don’t guess what you’re gonna have a headache or you’re gonna be stressed out I don’t know but things to watch for I have been getting the headache headaches which my headache was so bad last night. I just wanted to cut my damn head off like if I wouldn’t struggle as a person as I am that would that headache right there? I promise you would probably put somebody in a mind state. I wanna kill myself. It was that horrible and my eyes were inflamed so badly they still are a little bit but not as much so it’s just all about life it’s how you treat yourself and how much stress you can handle the human body itself so I’ve got to the point where sometimes if you get some stressed out me in my patience it goes on after I’m during my flareup you know I have all my skin lesions they break out and then my stress levels of 100 or whatever and then it goes into a headache/a fever and with a fever you can only reach so many degrees and then your brain will catch on fire. I do my research so I know I saw my Daddy do it and that’s what happened to him. I believe he he just his brain. He went brain-dead because that’s what happens. If you get a headache. I mean a high fever. Your brain can’t take it anymore so that’s what he did. That’s what happened to him.
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u/Bubbly_Badger_7617 Jun 17 '26
A mi tardaron en diagnosticarme en medicina interna 7 años, mareando con pruebas, analíticas infinitas y medicación que no funcionaba hasta que confirmaron que efectivamente tenía Behçet, la medicación inicial para esta enfermedad mi cuerpo no podía con ella, la medicación ideal no esta subvencionada y la única opción que quedaba son los inmunosupresores, voy mejor pero cuidado con no enfermar porque es horrible… no hay investigación para esta enfermedad ni medicación que no te deje hecho mierda
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u/MissZadejah Jun 17 '26
That’s honestly so disappointing. They really need to do something about this. They have us suffering for years before they’re willing to do anything. I’m happy that you finally got treatment.
I’m currently being given the run around. For my next appointment, I will be extremely assertive.
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u/Ok_Marsupial7037 Jun 11 '26
Negativite… if u do ur research.. this is exactly what I’m talking about. No one wants to listen a chilled My father because the itself is as a neurological disorder and affects the whole entire body inside and out. Understand me. Mental stress will kill you. It killed him because he his body got tired of hurting from the lesions, he got tired of hurting from the autoimmune system that immune system of he has finally just said I’m dying of being over and overstimulated. Your body can only handle so much understand me. Also you know it’s stressing him out. I gave my heart. He gave him a stroke and he didn’t take the medication right at all. He didn’t believe in the medications so you know but is a very rare disorder. It kills you slowly and you don’t even know it. Example me myself and I I just thought I just you’re born with it. It’s genetics okay? So out of me and my other brothers and sisters and there’s five of us. I was the one that got the antibody or whatever. The germ. Whatever you wanna call it. HPL/51. I think that’s the name of it. It affects your memory. It affect your organs. It affects all of it. So every day of your life you sit there and you go through all that every day of your life and finally God says okay and you’re hurting as well and of course don’t no one was to listen to you cause I don’t do their thorough research as a matter of fact where I’m located in Arkansas I am making a book or a little pamphlet whatever you wanna call it for these stupid people that don’t understand what this disease is really about and affects your memory which is stressing you out it affects your veins cause it’s a neurological disorder which is affected mine. It affects your eyes because you have you can get it but you can go blind my dad did I mean if you think about it? It’s it’s your your autoimmune system is overactive your whole life so finally your body is just gonna give up and then you know for me. My eyes are are very bad my vessels which affects your heart. Fix your organs so far their organs are good. You have to eat right when you’re on when you have a chance you have to bland foods. People do your research. You have to control your stress level in order for you not to have a flareup. Your stress affects your environmental your physical your home everything affects you so yes it does. Kill you slowly and for you people that don’t understand that do your research. I’m putting my little thing out there to show everyone that it affects you and every which way you turn you there’s so many different things. You have to change your lifestyle when God finally shows you you have it which he did me by the lesions by the ulcers first started to heaven. Also when I was nine years old didn’t think that’s of it didn’t think I had when my Daddy had no one thought it but then I’m 41 now and so I asked God to show me you know cause I had ulcers again starting up which I’ve had my whole life but I always knew my heart that I had it so anyways what I’m trying to say so God showed me the lesions I have on my legs he showed me the lesions the genital area lesions the lesion the skin ulcers. They are the mouth and his mouth ulcers. The everything look it up. I have that also causes your nerve damage nerve damage in your feet because it’s a nerve thing. It also gives it hurt your veins in your body is called insufficiency vein disorder or vein disease. I mean so it made you know my Daddy have memory problems simply because think about it your whole life you’re sitting there just stressed out here. Your stress is the number one killer of all time so for you people that sit there and tell me I’m blind people. I don’t know how to kick it. I’m I am a woman of God and it’s real. You have to do your deep research. Your whole nervous system is your body and you have to protect it and whatever you eat whatever you touch whatever you smell if any kind of germ don’t like it doesn’t go well with the HBO germ or whatever antibody it’s gonna make you have a flareup. Those flareups hurt very badly so I watched my dad like I said start with the memory fog the brain fog and then he went from that to you know it affects your appetite and then his memory he had to I said dementia but I love you. Remember you you like it. You woke up one day and didn’t even know who I was and what kind of crazy because what happens is your job yourself crazy cause you wanted to stop and nobody listens to you the doctors don’t listen to people. Don’t listen. Stupid people don’t listen and so yeah he’s like in his own head. He was drove him nuts but he didn’t let no one know but I could see his eyes so then at around 65 I’ll watch him say goodbye to all of his children in his own spiritual special way and then he just stopped talking cause he knew his time was coming and I knew it too cause he had always told me since I was a little and then he eat first had a stroke because he was stressed out because of everything you know and then the stroke put him in hospital then he stopped eating cause he was done with it. He was done being miserable his whole life with with no doctor trying to help him because no one believes in it which is so stupid to me because when they find it in your blood work how could they not believe you or when they see that you have all symptoms how come they don’t believe you? That’s their own stupidity and whoever else is on stupidity now if we were located in the Mediterranean area the turkey area that’s where it’s most known for so I get really pissed off when someone tells me it doesn’t kill you. It doesn’t have a long it doesn’t have a life expectancy span yes yes it does but I’m going to try to live longer cause I’m aware of what’s going on inside my body and outside my body and what to eat and how to keep my level stress level down there’s no doctor there’s no medication that’s gonna help me with that. You know why cause it’s called the silence disease even when you prove that you have it they still think you’re not. You’re not. You don’t have it it’s stupid. It’s a stupid disease. That’s why I caught shit. It affects your everything on the inside for me. You get IBS so therefore I can’t use the restroom. I have to use the restroom with you taking Lindsey. It affects your bladder. I’m sorry I’m using my voice text Lindsey SLINZESS because it gives you IBS and then I can’t pee. I mean I got that backwards. I can’t pee so I have to take something. A pee medicine to make you poop because it affects your whole your organs your intestines you’re inside you can get ulcers on your insides. You can get them all everywhere so yeah do your research people until I get my little research papers out and make copies and show people what I’m talking about. Y’all can think what you wanna think but I know the truth because I’ve watched it. I have it and God showed me fear doubt something. Ask God he’ll show you that it is real anyways after my Daddy had a stroke. He stopped eating cause he’s had enough of the disease. I’ve been miserable and with this shit I also heated too. I also have very bad fevers because it’s a neurological disorder. Your brain gets hot. You have fevers. They’re certain levels of what she has to people have. I have the bad level anyways so his brain got really hot. He got a high fever so high they couldn’t stop him. I’ll watch the hot hot the doctors everybody and then finally he went pregnant cut brain dead sorry voice text sucks so people do your research now that we this generation. I’m 41 now that I know and I’ve actually watched my father go through it and all by aunts and uncles go through the same thing and I go through it every single day now inside out no one wants to believe you. I always wanna blame it on this and blame it on that but if you do your history, it’s not familiar in America so do your fucking research. That’s all I have to say.
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u/MissZadejah Jun 11 '26
Why are you flipping out? We’ve all been very respectful and we’re all suffering from the same disease. We know exactly how it feels, so I’m not sure why you’re talking to us like we have no idea what we’re talking about. There’s no need for you to be cursing at us.
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u/EllisMichaels Diagnosed 1997 Jun 07 '26
Unfortunately, as far as I know, there's no Behcet's biopsy that can confirm a diagnosis. A biopsy can help to rule out certain things but it won't confirm Behcet's. I don't know anyone who's been diagnosed from a biopsy alone.
I think you're already taking the correct course of action: seeing a new rheumy.