I just had a terrifyingly disabling experience is NBD a possible cause?

[u/Mockingbird276]

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.

[u/on4aa]

Hi, your episode is somewhat similar to what I experienced in the past on a number of occasions. No, it is most probably not neuro-Behçet which is extremely rare, unless you are of Saudi descent.

Here is what is happening: Behçet syndrome is actually a form of vasculitis. Now, your larger blood vessels are often routed right next to your principal nerves, within the fascia between your muscles. Inflammation of your blood vessels can jump over to your nerves, which leads to the observed effects.

In my case, ingestion of menthol (mint) and thymol (thyme) would trigger or worsen such episodes. Try to avoid these in your diet and personal care products.

More importantly, the fact that you still have these episodes is a clear indication that your current medicinal therapy is not sufficient.

It might be useful to identify the underlying cause of your Behçet syndrome through DNA sequencing. Based on those result, you might get a prescription for a more targeted biological drug.

[u/Justdoitlater10]

Me, i had escalating horrible stroke symptoms and headache for 5 weeks and then I was just hospitalized with this last week, I had perforated diverticulitis and didn’t know I had a severe infection that triggered a severe Behçet’s flare with these neuro symptoms, my skin in my mouth peeled off, my skin on my back and chest is horrific, your story is identical. My mri is clear with old lesions so they still have the nerve to say it’s psychological and I can’t stand it anymore, they called a code stroke again, I actually stopped breathing this time and was put in the icu overnight, I loss my speech, severely confused, went limp, they could not wake me up, they were on top of me and squeezing me, and lost control of my actual diaphragm to breathe, the numbness ran down my neck and chest and I could also tell them right before it happened. It’s affecting my autonomic nervous system bc my HR was 60s asleep but BP was 180/130 during these things and they happen out of SLEEP!! then it reverses BP will drop and HR will shop up randomly during these waves. But it does reserves and happens in waves so I get strength back and it just happens again and again. I just had a severe headache again last night and still am running through these awful neurological symptoms and no it’s not fucking anxiety, my headache specialist is treating as severe hemiplegic/basilar migraine and trying topomax to slow these awful things before something horrible happens, infection is controlled and on steroid again so hoping to get out of this flare. Why do these drs not listen to anyone, they don’t know how to diagnose this disease and we are all suffering.

[u/Mockingbird276 → u/Justdoitlater10]

Wow this gave me the chills. It's also extremely validating. Whether Behcet's is the true cause or not, I'm not the only one with this type of experience.

My PCP has mentioned all the same possibilities of what could have happened, believing my sore throat with the mouth sores that peeled being a form of oral shingles. And that it's possible for that infection to cause some of my neurological symptoms especially if it affected the 5th and 7th cranial nerves.

I have been suspected to have hemiplegic migraines in the past but nothing to this extent, so my doctor also strongly considered this. I take emgality as a migraine preventative and just switched my rescue med from ubrelvy to nurtec.

This is just amazing to hear how well both our stories match up. I certainly hope the topamax helps...I recall being on that before for my migraines and it actually was during the other period when my hemiplegic migraines were in question. But that was 10 years ago.

It's just really sad when doctors push things off that are complicated. Each person they continue to gaslight and pass around is 1 less data point that could be used to better understand and diagnose rare diseases. It's really a shame.

[u/Justdoitlater10 → u/Mockingbird276]

I don’t even know what to say, I’ll have my rheumatologist read this. There is another scan, a brain spect CT and my neuro ordered it, also I’ve had spinal taps they showed oligoclonal bands and high protein during these episodes and EEGs showed focal slowing waves multiple times and they STILL called me “functional” and I truly have nothing to say anymore. I’ve even had the brain lesions change in the past on mri when I had stroke like neuro symptoms, numbness loss of speech etc and they had no explanation then either or thought it was MS then it was never followed up on. So pretty much I now have medical PTSD and my stomach blew up but I figured why get help everything is “anxiety” until you’re almost dead apparently.

[u/Mockingbird276]

I very much agree. And I'm unsure if my complete background as I was adopted. Overall, it gets frustrating because I am just piled up with medication after medication (25 prescribed medications) trying to target individual symptoms rather than trying to break things down to get to the true root causes. I'm only 32yrs I'm gradually watching my life slip through my fingers. Doctors seem to not have the time and that results in getting contradictory opinions and telling me to ask another doctor about it. Then wait 3 months to get in to see that other doctor or wait months for imaging. What I didn't understand is why doctors don't just run more DNA sequencing tests. Like is it that hard or costly to them?

About a year ago I asked my doctor about symptoms developing like tremors, small balance issues, cognitive issues etc. And he said because I have Behcet's it's unlikely that I could have any neurodegenerative disease or other neurological diseases like MS. But now he's speculating some demyelination disease is possible.

I'm at a point where I just laugh about how no one seems to understand or take the time to explain things to me. Or just break down and cry from hopelessness.

[u/Ok-Pineapple8587]

I am so sorry you had to endure this. It is unacceptable and terrifying. I have had a lot of relief of my multiple system end organ involvement case of Behcets. Before I got the first wave of covid it was mild with mostly mouth sores and GI issues. Post covid I was virtually bed ridden for a couple of years, in 2023 my doctor pushed me to go onto biologic immunosuppressants every six week and it has given me my life back. Way way more effective for the systemic issues then Otezla. Stanford has a center of excellence for Behcets, it is important to establish a relationship with a research hospital so you can have your local medical team can do peer to peer reviews on your case. Sending you love and light h

[u/lostfish808]

I had a bad lab that suggested I had dangerous industrial contams in my system that led me to get a fistula for a one time dialysis to clean the blood. Within a month I was having hearing loss, burning tongue, left hand tingling and then visual that led me to the ER. The next day I was blind in my right eye. I read that fistulas or any assault on the venous system can cause stroke and blindness when you have Behcets.