Hi everyone! Recently, I’ve noticed these strange bumps accompanied by a stinging sensation on the tip of my tongue. I’ve never experienced this before. Initially, there were three bumps, but after a day only one remained, which has persisted for a week. Are these canker sores, or is it something else? Has anyone dealt with this?
Hi everyone! I’m honestly getting a bit tired of collecting rare and weird symptoms, even for this disease (which makes me question every single time whether it’s actually Behçet's).
But has anyone here ever experienced orbital myositis? Specifically, thickening of just the lateral and superior rectus muscles, rather than all of them.
By some miracle, they missed this until I finally had a targeted orbital MRI with contrast - even though I was dying from severe eye pain and photophobia...
Hi everyone! I’m still pretty new to this diagnosis. My rheumatologist is convinced this is it, and I’ve already started treatment with Adalimumab, following a course of colchicine.
My main question is—is there anyone else here dealing with the same issues, or anyone knowledgeable about this? I’m having serious doubts about my diagnosis because of a ton of medical gaslighting from other doctors (including top specialists at the hospital).
My primary symptoms are optic neuritis, retinal inflammation, and suspected retrobulbar involvement (due to a massive amount of vision problems). On top of that, the number of gliosis foci in my brain's white matter spiked from 5 to 15-20 in just a couple of months, causing a bunch of neurological symptoms.
However, I’ve only ever had two ulcers, and they were in my throat last year. This confuses everyone, including me. It makes me feel like my disease doesn't fit the mold. Yes, I was told it could be Neuro-Behcet’s, but even for that, it’s progressing atypically—which the hospital doctors told me directly.
I’ve also had inflammation in my joints and tendons. I get rashes on my buttocks that only respond to steroids. There is scarring from past inflammation on my eyes and optic nerve, along with visual field defects (which went untreated back then). My capillaroscopy shows changes, and I tested positive for vasculitis antibodies. I also have sicca syndrome (dryness) and salivary gland inflammation, though Sjögren's has been ruled out. Standard rheumatology panels and inflammatory markers always come back normal, except for elevated fibrinogen and occasionally a slightly elevated CRP.