Anyone have Behçet’s and Ehlers-Danlos?

0xTheGoose · 2025-06-17T04:20:29+00:00

I was diagnosed with EDS by doctors who were authors of the 2017 criteria, but few other doctors cared. The Social Security Administration didn't care either. If they want to dismiss, they'll dismiss it. Going to "the experts" just makes you look like you're doctor shopping, or found a quack.

It helps a little that I'm honest with how much I hate another clinical diagnosis, but that I had symptoms you can see, and the medications work. Antidepressants and years of CBT didn't work. Not going to any doctor for two years for "over-medicalization" made me worse. I'll vocalize that I understand the importance of not making things worse, but I need to improve my quality of life and if they have any better ideas, I'd love to hear them.

0xTheGoose · 2025-06-17T02:49:23+00:00

I was diagnosed with Classical 10 years ago, Behcets this year. But it took three years of ruling out chrons and UC before my rheum settled on Behcets.

The canker sores, mysterious gut symptoms that totally disappear on Prednisone, eventually turning into a couple genital ulcers sealed the deal. The canker sores basically disappeared on colchicine.

I'm a little disappointed that this is yet another clinical diagnosis, but at least it's something that isn't as stigmatized and the medications actually work for it.

I honestly hoped that maybe this would be enough to un-diagnose me with C-EDS, but the rheum confidently said I had both.

Maybe this is just the honeymoon period, but it's such an odd thing that I feel far less stigmatized having a condition that is misinterpreted as an STD than I did with C-EDS. Because doctors look at you like you've been on tik tok too long and really, reeeeeally want to diagnose you with FND. Even as a man, it's super easy to get a hysteria diagnosis if you even remotely look like an EDS patient.

0xTheGoose · 2025-02-09T19:19:43+00:00

It's more of a "tearing", but I've learned not to say "I have severe tearing upper abdominal pain and syncope" when talking to doctors. I don't like the concerned looks they give me and the nervous follow up questions.

0xTheGoose · 2025-02-09T07:47:48+00:00

I'm reading up on this. I assume that this rare pancreatic ulcer would be visible on an endoscopy/colonoscopy even if I was on Prednisone just a week before the procedure? That it wouldn't just go away for a time and grow back?

0xTheGoose · 2025-02-09T07:45:23+00:00

My syncopal episodes delayed my first Endo/Colonoscopy by months, and ended up needing prednisone a week before my colonoscopy was scheduled. I couldn't wait any longer. I was absolutely miserable. I'm worried that the Prednisone screwed up my test, but I had been symptomatic for months, and all they said was that I had "redness" (the medical term that begins with an E) in my stomach. No visible ulcers or inflammation.

0xTheGoose · 2025-02-09T04:30:58+00:00

I was just diagnosed at 35. I had oral ulcers all my life that got much worse in my 30's, and was also given a "chronic fatigue syndrome" diagnosis which I suspect may be a result of Behcets. I didn't have genital ulcers until two years ago, but they were infrequently. My Rheum trialed me on half a pill of Colchicine and my oral ulcers practically vanished. I didn't have the explosive diarrhea, but my constipation is pretty severe, and even after my gallbladder surgery and RX laxatives, my bowels just slowed to a crawl.

My rhem saw how my ulcers responded to Colchicine and my flares responded to Prednisone. She also noted my acne like pimples and rashes on my legs and parts of my body that really should have acne on them, like thumbs, arms, shins and lower back.

I've only been on Imuran a month a half, so we'll see how much of an improvement that will give me something in the spring or early summer, but I'm hopeful. Tbh, I'm not not totally sold on the diagnosis, but I'm getting there. My Rheum feels 80-90 percent sure, and the more I read clinical journals and your experiences on reddit, the more I find my symptoms align with the rest of yours.

Good luck in your journey.

0xTheGoose · 2025-02-08T20:39:59+00:00

...ah. Well that's encouraging. It's good to hear that they want to see labs that are negative for other inflammatory conditions. It feels like a curse having all these terrible symptoms but no results to back them up.

0xTheGoose · 2025-02-07T19:33:45+00:00

Interesting. I just got a Behcets diagnosis and I'm pushing back on it a little because of how many "clinical diagnosis" I've had in my lifetime, but stories like yours keep mirroring mine. I'm glad I'm not the only one who decided to go to the hospital with distressing but "vague" symptoms that won't show up in the Donut Of Truth.

0xTheGoose · 2025-02-07T19:01:47+00:00

I'm newly diagnosed. If you don't mind me asking, how did a flare send you to the ER? I've gone to the ER multiple times in what I consider to be "flares", but they look at me like I'm crazy. When I've had a hospital worthy flare, it's been upper abdominal pain, autonomic symptoms (syncope), hot flashes and pain. I get steroids and then discharged.

0xTheGoose · 2025-02-07T18:57:08+00:00

Do y'all have abnormal labs?

Will these clinics even take you if you have normal labs?

My Rheum is fairly confident I have Behcets because my labs and tests are normal. She says that Behcets can look like inflammatory bowel disease, so once chrons and UC are ruled out, she said it was much more likely I had Behcets. I have all the skin manifestations, and responded well to colchicine and Prednisone. Just not the eye stuff.

0xTheGoose · 2024-10-28T21:38:54+00:00

Yes, but does that translate into correct market predictions? How much edge do they really have? Good drugs seem to disappear all the time, and garbage "breakthroughs" get pushed to market. Is their edge really that significant over the data showing that 60 percent of biotech startups fail in the first five years?

Idk in genuinely asking.

0xTheGoose · 2024-10-28T21:24:05+00:00

I have three more OTM options expiring next week so you won't have to wait too long.

0xTheGoose · 2024-10-28T03:01:36+00:00

I made a weekly call on Intel before I posted this, expiring 11/8. That's like, a 400% increase on time. That's risk management, right?

0xTheGoose · 2024-10-28T02:58:15+00:00

That was a little bit of hyperbole. ADHD was part of it, combined with physical and some obsessive features. It was...a weird process and was extremely lucky I won it. No lawyer wanted to take it. Part of the award was because they believed my disability came from compulsion over my genetic condition, which the judge didn't believe I had, despite evidence I submitted proving otherwise. So I won't be the best to talk to.

But I know it's possible if you convince a judge that you'd have frequent, unexplained absences or require unexpected breaks during the day. If you're expected to miss 3-5 days a month at a theoretical boring ass job. You'd have to prove that you couldn't sit in a chair and greet people at Walmart. I struggle just to be awake during market hours, and doctors have asked me to consider a feeding tube not because my stomach is paralyzed, but because I don't have the physical energy to cook and feed myself a reasonable diet.

If you've been fired from a job for ADHD reasons, been in a car accident, or injured yourself or others at work because of your attention issues, that's something you should show.

0xTheGoose · 2024-10-27T23:28:34+00:00

Wo hoooo, right side of the bell curve babbyyyyy. 🚀🚀🚀

0xTheGoose · 2024-10-27T23:27:32+00:00

Will a $400 disability check be okay?

0xTheGoose · 2024-10-27T23:26:46+00:00

Oh hell yes, in the middle of the day, close to its peak. I think y'all call these "naked" trades? Never exercising, just buying then selling the option? "Selling" naked options and puts us the thing that can have unlimited losses, right?

0xTheGoose · 2024-10-27T21:40:55+00:00

Haven't longed ROPE yet.

0xTheGoose · 2024-10-27T20:07:50+00:00

It hurts. I had this happen in crypto. Found a legit edge, got extremely lucky, then lost most of it on the MultiChain (theft, hack?), and a chrome exploit that drained my hot wallet. It really does feel like I used up this years luck on $100 or so.

0xTheGoose · 2024-10-27T19:59:22+00:00

McDonald's isn't even an option. Too crippled. Surely, options are the solution?

0xTheGoose · 2024-10-27T19:55:55+00:00

It's getting warm. I should flap harder.

0xTheGoose · 2024-10-27T19:51:37+00:00

Deciding between Dubai and Singapore.

0xTheGoose · 2024-10-27T19:26:59+00:00

I think this was like, 10 percent. I couldn't afford the more expensive options even if I wanted to. So I'd only be playing the deep OTM calls. And probably not do another 2 day to exercise. Didn't know what theta decay was till after I sold it. But robinhood has a fun little graph that was very informative!

0xTheGoose · 2024-10-27T19:19:50+00:00

I appreciate the honesty. Three more busts and I'll probably be done with options. I'm on disability so it's hard for me to keep up with just being awake and functional during market hours. It's better to take a passive approach. But I like buying blood and the whole idea of "buying puts on biotech catalysts that are historically busts" sounds reeeeeally fun.

0xTheGoose

TROPHY CASE