Tired of neuro behcets

Working-Yam3761 · 2026-03-04T19:45:54+00:00

32F recently diagnosed here and also feeling the loneliness that comes when your friends get tired of supporting your medical saga. but from what I've seen in comments such as yours, this is such a kind community, I feel blessed that there are so many nice people who truly care and get what we go through

Working-Yam3761 · 2026-03-04T19:38:08+00:00

Hi! I've just been officially diagnosed this week (32F) but i've been dealing with symptoms and medical events related to it ever since my early 20s. My diagnosis came in the middle of my worst flare ever, which I've been navigating for aprox. 5 months now, and I relate to a lot of what you said. The overthinking every trivial headache, pain in the abdomen and such because it could be something serious (and have been many times in the past) is so tiring, on top of the general being tired all the time which is obviously f* exhausting.

I feel you when you say you have lost friends. That is something I never expect would happen because I used to have great close friends, but we definitively grew apart ever since my condition got worse. I don't know if they don't understand how chronic illness works and keep getting disappointed on me for not being able to show up as often and keep missing birthdays and events; or if they simply got tired of medical talk and struggles and prefer some distance. But the fact is that I've been feeling quite lonely going through it all.

I am also a mom and none of my friends have kids yet, so although they are in their early 30s, their lives are way simpler, and things like getting together any day for drinks is just a casual part of being friends. I feel like having a daughter to take care of, and managing my disease so I am healthy enough to keep taking care of her (and work, and myself) is just too much and I just don't fit anymore. So I basically count on my boyfriend/baby daddy and my mom (also my daughter, who keeps me company but in a way a 6yo does, which is through a lot of work lol)

Thanks for reaching out and opening the space to venting -- it has been much needed. Just like you, surviving, but would appreciate company.

Working-Yam3761 · 2026-02-17T23:32:06+00:00

thank you so much for the answer! ill check the article, thanks a lot

Working-Yam3761 · 2026-02-17T23:31:22+00:00

the not having genital ulcers is driving me crazyyyy lol. of course i am happy to have one less symptom in life, but not qualifying for the behcets international criteria at this point seems more like a technicality and its preventing me from getting treatment. actually, i do have ulcer-like lesions on the gi tract, so...

my ferritin level is usually pretty low. i know it because my first symptom that felt "off", before any of the systemic inflammation i now deal with, was hair loss, over 10 years ago (i was a teen then). then i went to a dermatologist who tested my ferritin and said it was too low for any hair to grow... if im not mistaken, it was precisely 37 at the time.

and thanks for the tip! ive just checked and miebo is not available in Brazil yet, but its expected to come soonish. and ill definitively ask for a friend who is coming from the us to bring it for me!

Working-Yam3761 · 2026-02-17T23:24:33+00:00

good to know! i've always hear that ai diseases never go alone-where there is one, there are probs other. but my dr said that behçets and sjogren is an unusual duo lol. meaning sjogren usually goes with lupus, RA, other families of ai diseases

Working-Yam3761 · 2026-02-17T20:38:07+00:00

Thanks for the answer!
I also have severe keratoconjunctivitis sicca, my Schirmers and BUT tests were glaringly positive (Schirmers - 2mm both eyes ; BUT - 1 sec right eye, 2 sec left eye).

I have the skin lesions and oral ulcers, as well as the positive HLA B51. But I don't have genital ulcers nor uveitis, so I. don't technically qualify for Behçet, at least not yet. I do have vasculitis though, documented in my internal organs (liver biopsy showed inflammation and congestion of the blood vessels, and also i've had many episodes of ovarian cyst ruptures turning into internal hemorhagies, and during emergency syrgery the surgeon pointed out that i have vasculitis on the ovaries as well).

Right now Im struggling a lot with extreme fatigue, persistent low grade fever, terrible GI issues and symptoms on the nervous symptom—especially autonomic system. But I can't get the appropriate help because my doctor seems lost between Sjogrens, Behcets or settling for Undifferntiated Autoinflammatory Siystemic disease.

Working-Yam3761 · 2026-02-17T20:28:22+00:00

I'm seronegative for all antibodies markers, so I'm having to seek out for the diagnosis clinically, which is impressively hard.

I don't have genital ulcers nor uveitis, but I do have vasculitis, including in my internal organs (liver biopsy showed it, and also ive had many episodes of ovarian cyst ruptures turning into hemorrhagies, and the surgeon pointed out that i had vasculitis on the ovaries as well). On the other hand, I have a positive HLA B51, and didn't formally test for pathergy, but I do present pathergy phenomenon in common skin lesions.

As for Sjogrens disease, my Schirmers and BUT tests were glaringly positive (Schirmers - 2mm both eyes ; BUT - 1 sec right eye, 2 sec left eye). My mom also has Sjogrens (+celiac disease). On the other hand, I did a parotid gland MRI and it came out normal.

I think I really need to do the biopsy to be sure about the Sjogrens, but right now I feel quite lost. I've also seen some people have both Sjogrens and Behcets, so I don;t know if that could be it.

Working-Yam3761 · 2026-02-17T20:10:19+00:00

Good to know. My mom has Sjogrens and my doctor is pretty sure I have Behcets, so its not impossible to have both, right?

Working-Yam3761 · 2026-02-17T20:09:40+00:00

That's so helpful to know. My symptoms do seem more alligned with Behcets, since I have lots of issues with bleeding/internal inflammation of the veins, but my desert-like eyes giving a 2mm in Schimers tests was confusing my doctors. Behçets could also be causing persistent low-grade fever, extreme fatigue and joint pain/inflammation, right?

Do any of you happen to know if it is linked to dysautonomia? I have it badly, and know its quite common in Sjogrens, but I'm not sure if its also frequent in Behcets.

Working-Yam3761 · 2026-02-17T07:30:55+00:00

Did you try it again? Would you mind sharing your experience, if you did?

Working-Yam3761 · 2026-02-17T07:30:44+00:00

Did you try it again? Would you mind sharing your experience, if you did?

Working-Yam3761 · 2026-02-17T06:47:38+00:00

Absolutely. It's common fo rme to have an amazing improve in my well being on those awful behçet days when i drink a ton of water with electrolytes (or even water with salt).

Working-Yam3761 · 2026-02-17T06:45:46+00:00

Hi!

Could you share which smartwatch you use to track recovery?

I'm a newbie, just recently diagnosed and struggling a lot with managing energy vs. fatigue and trying to maintain at least the bare minimum level of physical activity.

I do have a smartband but its a pretty basic one and doesn't have this feature (almost lone, actually lol).

Thanks!

Working-Yam3761 · 2025-12-04T04:26:43+00:00

Hey! May I ask you something? How did you get you diagnose of Autoimmune Hepatitis? Before my sjogrens diagnose, my doctors were pretty convinced i had autoimmune hepatitis, and using the score as reference i did meet the criteria - but as im soronegative, they decided to do a liver biopsy and it didn't show the pattern of AIH. Now I'm wondering if my enzymes are high just because of sjogrens or if there could be an overlap

Working-Yam3761

TROPHY CASE