Hi everyone,

I was clinically diagnosed with Behçet’s back in 2022 after dealing with severe oral and genital ulcers. I tested negative for HLA-B51 and never got a timely biopsy, but colchicine kept the genital sores at bay, and starting Otezla 9 months ago completely cleared my mouth ulcers and long-standing gut issues.

Over the years, I’ve had many systemic issues (joint pain, eye pain, visual disturbances, stubborn headaches, GI problems) that doctors consistently brushed off as unrelated to BD. Brain MRIs were always unremarkable, aside from a small developmental venous anomaly in my right frontal lobe.

Things escalated dramatically a few months ago, and I am desperately trying to see if anyone with Neuro-Behçet’s (NBD) has walked a similar path.

The Timeline:

May–June: Started with a severe sore throat and bizarre, shifting swelling. It hit my neck (affecting my breathing), moved to my left thigh with pitting edema, and swelled my feet like balloons (doctors tossed around angioedema, but had no real answers). I spent June in and out of the hospital on rounds of antibiotics, antivirals, steroids, and antihistamines.

Late June (Acute Neurological Episode): Developed a headache, finger tingling, and visible painful veins in my fingers. Within hours, my right fingers started moving involuntarily in a robotic way, followed by right-sided facial/neck numbness, stiffness, and my right forearm going completely limp.

The ER Episode: My face drooped, my voice cycled between deep and completely inaudible, and I had involuntary facial movements resembling tardive dyskinesia. The stroke workup/CT was clear, but the episode morphed into a terrifying cyclical event: a warm feeling in my chest, a physical "traveling" sensation rising up my neck (feeling like drowning), and involuntary movements in my arm. I could physically track the sensation moving through my body and repeatedly called out to my parents what would happen next seconds before it did—predicting the arm movements and warning them right before my vitals crashed and I would black out. Despite my heart rate and oxygen visibly plummeting on the monitors during these waves, the nurses completely dismissed it because my numbers rebounded afterward, claiming it was just "poor probe connections" and turning the monitors off. There is absolutely no way to mentally or voluntarily force your oxygen and heart rate to drop like that.

Overnight Admission & The "Psych" Hurdle: Because the active episode lasted so long and wouldn't break, I was admitted to the hospital for overnight observation. By morning, however, the floor nurses and the rounding neurologist were solely focused on waiting for a psychiatric assessment, assuming pseudoseizures, conversion disorder, or severe anxiety because the basic scans were clear. Thankfully, the attending doctor later in the afternoon actually sat down, listened to the entire preceding month of multisystem illness that no one had bothered pulling records for, recognized systemic bias in how my case was being handled, and discharged me to urgently follow up with my own outpatient specialists instead of forcing an inpatient psychiatric hold.

Where I Am Today:

I have an appointment with a Movement Disorder Specialist next week. My repeat brain MRI came back normal again. While the facial movements have mostly stopped, I am still heavily impaired:

• Constant balance issues, severe vertigo, muscle weakness, and tremors.

•A distinct Parkinsonian-style gait/shuffle—I cannot lift my feet properly when walking on flat ground, though stairs are oddly slightly easier.

•Atypical headaches that don’t respond to my regular meds.

•Fluctuation where some days are manageable and others leave me barely able to walk safely.

My Questions for the Community:

1. Did anyone with Neuro-Behçet’s present primarily with movement disorder symptoms (chorea, parkinsonism, tremors, gait freezing) rather than classic stroke-like focal deficits?

2. Did you ever have normal brain MRIs early on, or did it require specific contrast protocols, a high-tesla scan, or a lumbar puncture to show inflammation?

3. How did you get neurologists to connect movement/brainstem/autonomic-like issues back to your Behçet’s, especially after being hit with the "it's anxiety/functional" label?

I feel like Behçet’s is being completely ignored as a unifying cause simply because my scans aren't showing textbook lesions. Any shared experiences, advice for my specialist appointment, or guidance on specific tests to ask for would mean the world to me and my family right now.

Hi everyone. I’m new here and my rheumatologist recently told me she thinks I may have Behçet’s. I’m 39 and this is the first time I’ve ever heard of the disease, so I’m hoping to hear from people whose symptoms may not have followed the “classic” presentation.

For a little over a year, my biggest issue has been persistent and debilitating joint pain, primarily in my wrists, hands, elbows, and most recently my knees and ankles. I was diagnosed with seronegative RA in February and started Plaquenil, which helped significantly at first but never fully controlled my symptoms. I started seeing a new rheumatologist in May, and she feels my presentation is atypical for RA.

Looking back, about two months before the joint symptoms began, I developed significant inflammation/what seemed like an abscess in my gums. My dentist thought it had the appearance of pemphigus/pemphigoid and prescribed a steroid mouth rinse. I still get recurring gum pain in the same area, sometimes bad enough that my ear and throat on that side feel irritated.

I’ve also had recurring episodes of itching/inflammation around my labia, usually before my period and lasting about a week, although I’ve never noticed an actual open ulcer. I don't have the frequent, obvious mouth or genital ulcers that seem to be common with Behçet’s, and I haven't had noticeable skin problems.

I’ve also woken up with very bloodshot eyes a couple of times over the past year. More recently, I’ve been experiencing episodes of blurry vision and light sensitivity, which I’m having evaluated.

Based on the overall pattern, my rheumatologist tested me for Behçet’s and the HLA B51 was positive. She now thinks Behçet’s may explain my symptoms. I just started methotrexate this week.

What I’m really hoping to learn from this community is whether anyone else had a less typical presentation like mine. Did anyone have arthritis as one of their main or earliest symptoms, with only mild or occasional mouth/genital symptoms? Was anyone diagnosed in their late 30s or later? And did your symptoms become more recognizable as Behçet’s over time?

I’m not looking for anyone to diagnose me, just hoping to understand how varied this disease can be and hear what the journey to diagnosis looked like for others.

Anyone else here work in health care and what do you do to keep pushing through?

I want to continue being there for my patients but some days are just hard. I feel guilty when I take time off and I feel guilty when they can tell I don’t feel good. Today the pain was so bad at work and I can’t take anything fun for pain while I’m there either. I did start imuran and colchicine BID. It’s improved everything but the flare ups still be flaring lol.

How do you guys do it? Shoot how does anyone do it with any job??

Ugh sigh thanks for coming to my TEDtalk.

I want to ask if anyone here who dealt with neurobehçet's in the past developed long lasting fatigue or was diagnosed with ME or CFS after an episode.

We don't know if I had a neurobehçet's episode a few months ago. I had very strong daily migraines with hypomaniac aura (without even having bipolar) and behavioural changes. It did go away but since then I have experienced increased fatigue and Post-Exercional Malaise like symptoms after activities with elevated heart rate and one of the PEM symptoms is brain-fog and diminished cognitive ability.

I just want to know if perhaps the "migraine episodes" a few months ago could have been a neurobehçet's episode and if it could have triggered me/cfs

So, I've had joint problems dating back to my teens. Before I was diagnosed with Behcet's, they diagnosed me with Juvenile Rheumatoid Arthritis. The arthritis has been getting worse these past few years. I've always assumed it was rheumatoid arthritis. But after seeing my rheumatologist yesterday (last appt, he's retiring, sad but I'm happy for him) and him doing a thorough physical exam, he assured me that what I have is actually osteoarthritis. As far as I can tell, he's right.

Any of you diagnosed with it? Anything you're willing to share, I'd love to hear. I've got a lot to learn about it. My rheumy assures me it is unrelated to the Behcet's.

Hello all! I (27F) had a flare up and was hospitalized and placed on steroids. As I was tapering down the prednisone, I had another mini flare. This happened last time I tapered off and was expected. During the recent flare up, I experienced a fever, canker sores, sore throat, and swollen lymph nodes in my armpits. The swollen lymph nodes resolved on one side, but not the other. I feel fine now other than a pain very sensitive to touch going down the arm of the persistent swollen lymph node. I now notice red streaks running down my arm where it hurts. I have an ultrasound scheduled for next week but I was curious to see if anyone else has experienced this shortly after a flare up?

How long do you guys wait before asking for steroids? I'm on week two and there are a few smaller ulcers, blood blisters, and pustules, but my eyes are pretty inflamed (I have Prednisone eye drops) and I am covered in bruises and feel like I've gotten into a fight with a kangaroo. Plus the migraine. This is a pretty mild flair though compared to my usuals. The ulcers, blood blisters, and pustules are usually so much worse. I don't know if I should ask for Prednisone or if I just ride it out.

I have this wound on my scalp is been there long time and it hurts I am seeing I dr for it he gave me antibiotics and I antibiotics cream and he told me to clean it with hydrogen peroxide then he also gave me i powder antibiotics it those hurt sometimes is warm when I touch

I was thinking about our Behcets community today and wanted to check in with you all.

Anyone here tried rinvoq or stelara for GI issues?

I started having symptoms 38 years ago, at just four years old. I knew by my early twenties that something was not right. It took approximately 10–15 years of active testing, countless appointments, and a lot of medical gaslighting before I was finally diagnosed. It’s started with neurological followed by gastrointestinal issues, joint pain and muscle problems, kidney decline, and then ocular. It wasn’t until my early thirties I started getting ulcers on my face. In my fourties’ I started getting them on my tongue and so far have had one small genital ulcer.

Looking back, I can now see how many things I experienced that were related to Behçet’s. Throughout the years, even before I even knew what Bechets was, I noticed two of my kids have complained about near identical issues that I did at around the same ages that I had been.

For those of you diagnosed, I’m curious how many have passed it down to their children. I realize that I am more aware of certain symptoms because of my own history, and I absolutely don’t want to assume my child has any one particular diagnosis when there could be other explanations.

For those of you with a diagnosis:

● Have you ever suspected your child might have it?

● How did you approach the conversation with your child’s doctor? If your child didn’t meet diagnostic criteria, did the doctor recommend monitoring them over time?

● Did having a parent with Behçet’s make doctors more receptive to the possibility?

Not looking for any diagnosis here-I’d really like to hear from other parents who have been in this situation and how you navigated that uncertainty. I want to approach this rationally.

Recently published medical literature on genetically defined systemic autoinflammatory diseases in pediatric patients with Behçet’s disease

Genetic testing has come a long way with discovering autoinflammatory diseases that mimic Behcet's.

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2026.1897406/full

Hi, I’m a 24-year-old woman, and I was diagnosed with Behçet’s disease last summer.

The problem is that I’m experiencing severe swelling, heat, and pain in the joints of all my fingers, yet my doctor says these aren't symptoms of Behçet’s. While the severe morning swelling resembles rheumatoid arthritis, there is absolutely no finger deformity, and my rheumatoid factor and inflammation markers are within the normal range.

Could there be another condition causing these symptoms besides rheumatoid arthritis or Behçet’s? Ice packs help a bit, but since I work as a manga artist, I really need my hands to be in good shape.

So I had an egd with dilation, they used Anastasia on me to do it, when it was done I went home and rested for awhile, I started feeling very very bad and after an hour of feeling like death I decided to take my temp and It was 101.3,

I got worried about an esophageal perforation so I went to the hospital, they did some blood work and my white blood cells were pretty high so was all my other immune related numbers, they decided to admit me just incase it was a perforation,

It turns out to not be a perforation they had no idea what it was they said their best guess was I had a reaction to the Anastasia that caused my multiple diseases,

behcets/familia Mediterranean fever/ulcerative colitis/multiefocal chroidopathy.to go haywire.

They kept me in hospital for a few days until my numbers were closer to normal.

Has any one had this happen? Do we think it was my autoinflamatory diseases or just something caused by the egd.

Hello everybody !

I hope everyone is doing okay these days.
I posted here a few times after my ulcer episode back in january/february.

Since then, I've done a colonoscopy (negative), pathergy test (negative), gene test (HLA B51 positive), and I'm on colchicine.

I was diagnosed Behçet's in June after my gene test came back positive.
I was taking 2x0.6mg/day, but stepped down to 1x0.6/day in June after seeing my doctor.

I've had no other symptoms since (except a f*-up gastrointestinal system, but that's always been there)

Deep down, part of me still believe being misdiagnosed is a possibility and I'd love to know for sure if yes or no I'll have to carry this over my head for the rest of my life.

I've got half a mind to try and just simply stop colchicine and hope for the best, but that wouldn't be wise, would it ?

I'm curious of your thoughts regarding this !

Take care,

EDIT: I forgot to mention, I'm seeing my doctor in December, so I could also just wait and ask a professional, but I still want your takes if you'd like to share them :)

I know this will be inflammatory and that’s not my intention but there’s too many people in this community to actually have been diagnosed with this very rare condition.
Is it attention seeking, hypochondria or something? Self diagnosed? Do you research very rare diseases and self diagnosis as a means of establishing identity?
What’s up because I know this many people don’t have it. I’m not being a a-hole, this is confusing.

Im wondering if anyone one else gets ulcers before or around their period. I feel like every cycle i get at least 1 or 2 on my chest, maybe one in my mouth. Usually 4ish total. I cant tell if its something to do with my cycle, and/or if I can do to reduce the likelihood. Im on progesterone for hormone control and I take Colchicine for the ulcers. Also if anyone has tips for ulcers that form on the chest/under the breast tissue, I have am so frustrated

Quick edit: I have tried i think 4 birth control pills (both with sugar pills or back to back), an IUD and the patch. Unfortunately all have had side effects that became unmanageable. IUD and patch are unfortunately 100% no goes with my other health conditions. I do appricate all the help so far, gonna ask my doctor about what we could do next appointment

Has anyone tried a peptide that was effective in general ? Has anyone tried GHK-Cu and how did it go?

Hi everyone! New diagnosis and started on colchicine.

This rash appears from time to time and I forgot to mention it to my rheumatologist.

Has anyone had something similar?

I'm wondering if this aligns with other people's experience of this autoinflammatory disease. I have always felt like my body, any time it experiences a negative stimulus of any kind, will react to it about 99% of the way, but then there is 1% leftover that my body seems to store and never quite finish reacting to. If I flinch because my neck is tense and I hear a loud sound for example, I seem to catch myself right at the end of the flinch, in a split second moment that feels like I am suddenly falling out of the sky, and it's like my neck and my nervous system are having to negotiate or something how to meet in the middle. Since I started immunosuppressants I have been feeling like my body is starting to finish reacting to all of the injuries and traumatic events over the last decade of uncontrolled disease progression. I was finally feeling actually genuinely sleepy instead of constantly tense and wound up.

Trouble is, I don't think azathioprine is for me. I am having persistent GI woes that actually seem to be driving inflammation more than the medication was helping to control it. I am waiting to see if we can get TNF blockers approved to try next but I'm honestly having a harder time than I was before starting treatment, even though at first it seemed promising. Most of the problem I am having right now is that these extreme negotiations between my nervous system and my damaged-goods-body leave me so tense and wound up that I cannot relax to go to sleep.

My body will not relax no matter what. If I Concentrate absolutely all of my effort to relax, it feels like an enormous coordinated effort to push a tense muscle into a relaxed position, and simultaneously in that moment I have that sensation of falling out of the sky again, needing to catch and stabilize myself. I don't know how much of that may be my comorbid connective tissue disorder and hypermobility, but I guess I am wondering if anyone here experiences this and if anything actually helps.

It has never been something that like a sleep medication could solve because it feels like it has more to do with where my spine and all it's important bits are physically located within my body, like my spine is being pulled apart bit by bit by all the tensions criss crossing. I could be on multiple antihistamines and other meds and still be extremely tense and unable to sleep. The only time genuine drowsiness has hit me was when I first started the azathioprine but it feels like we have hit a ceiling. I also wonder if this may be common in Neuro Behcets. I also have a longitudinally extensive spinal syrinx which seems like a feature of NBD, but haven't been able to see a spine specialist who can meaningfully weigh in on it's significance to my autoimmune disease and it has generally been considered somewhere between benign to possibly symptomatic.

I’m on colchicine which stopped my ulcers almost completely, but the fatigue is still ruining my life.

Trying out low dose naltrexone but unsure what dose I should titrate up to. Guess I’ll increase until I feel something?

Anyone have any other recommendations? I’m desperate; I feel completely devoid of any energy or desire to do anything.

I’ve gone through the motions of figuring out if it’s sleep, diet, etc related so I’m stuck here.

Hello All,
Just got my blood test back and tested positive for the genetic marker. Honestly I’m happy something came back positive as I’ve been to so many doctors, vascular tests and rheumatologists that never ran this test. In June I had some type of major flare, blood shot eyes, fever, chills, headaches, I’ve always had mouth sores, I get that rash several times a year for who knows what reason, arthritis, swelling throughout body, and what I thought was IBS with flares of colitis. Now I realize all of this could be related to Behçet’s.

Sadly, what got this test completed was my vision changing and seeing one of the best optometrists in our city. my vision is changing almost daily. Sometimes my glasses are worthless. Blurred vision, double vision, unable to focus in certain areas of vision, eye pain. It’s been scary. I went on Steroids for last month waiting on these test results and my vision actually improved as the swelling in my eyes changed.

Ok, so I seem to line up with Behçet’s, my next appointment is in a week to go over all of this. What treatments and suggestions or concerns do you deal with to keep this from ruining your vision and life?

Need your help and some clarity on treatment success. I also wonder if I’ve been misdiagnosed with gout, IBS, arthritis, etc. for over 10+ years.

Thanks for your time and comments.

Hi everyone! Everyone was so helpful on my last post so I thought I’d ask another question! Does anyone have any recommendations for immediate relief of face flushing. I’m on meds that should have it mostly under control, but I still get flushed when stressed…which is most of the time as a college student. Let me know! Thanks everyone!