Behcet's Syndrome Society
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Possible Behcets? HELP.

I'm going crazy, I'm convinced of it.

No doctor has been able to figure out what is wrong with me even though they can see visible symptoms. I've been passed around from Lupus, Crohn's, and even "viral" related sickness.

I recently started researching and found myself VERY curious if I could have Behcet's. I'm scared that I will continue to go in circles, unless I reach out. (I know we are not here to diagnose, but maybe a fellow neighbor can lend an ear!)

3 years ago- It started with 40 pound weight loss within 3mths due to extreme abdominal pain, diarrhea, nausea, hair loss, extreme fatigue, dizziness, and mouth sores that persisted for more than 1 week. Around the same time I had daily headaches and went to check my vision only to have the ophthalmologist tell me that I had a "cupping" of the nerve in my right eye.

Recent- Stomach pain and diarrhea resumes. I had an upper and lower endoscopy to find that I have multiple (but small) ulcers in my lower small intestine.

I don't have an genital ulcerations, but I have chronic mouth ulcers. Usually they pop in 2-4 ulcers around up on my tongue, inner and outer part of the gums and occasionally trauma lines (from biting my cheek/lip) all at the same time.

I've recently felt as though as my brain is in a fog (bad fog). I'm tired all the time. I do have Raynaud's. Also, when I have these "flare-ups" I have low grade fevers ranging from 99.5-101 F. Needless to say, I feel awful.

I guess I'm just looking for validation... I have so many other things going on physically, but obviously I've written a book.

Any suggestions/advice? Please, anything will help me. Thank you!

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Morning DBran

I'm sorry to hear your going through such rough times, I know exactly how you feel as I have been there myself. First I would suggest that if your in the UK get your GP to do a referral to your nearest Center of Excellent, I would recommend to keep a diary and take pictures of all ur symptoms. You can never have to much pictures, so keep tracking your symptoms this way. Also aske your specialist to check for HLA 51 gene this is a specific gene that is associated with behcets, even though I must say should you carry this gene, It does not automatically mean you have benchets. But it could be a good start. As for chrone there's also a specific gene they can look for, I'm not sure which one it is though. I do hope this is helpful to you. You can also read my previous post as you may find it useful.

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Thank you so much for reaching out to me! It really means so much to me.

Unfortunately, I live in the US. I will certainly document any and all things that happen to me. (Thanks for a great tip!) This is the first that I have heard of a specific gene being associated with Behcets, but nevertheless I will most certainly ask to be screened for it.

My Gastro was nearly positive I had Crohn's with the way I presented, with the diarrhea and ulcerations found in the endoscopy. However when I went in for him to present the results of the biopsy and blood work to me, he literally said "I have no idea what you have or what this is" and shortly thereafter put me on an unneeded IBS medication specifically for diarrhea. I think he was extremely confused.

You certainly did help me! Thank you so much for your response and your time!

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What is the blood work called for testing to see if you have the gene? I’m seeing a rheumatologist tomorrow and haven’t been diagnosed was told by the neurologist that this doctor will decide if I have Behcet’s.

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The gene is only about 40 percent crossover. So don't be alarmed if you are not a carrier.

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I’m wondering if that will show up in my 23 & Me I did the health and ancestry testing. Do you think I should I ask the rheumatologist about it?

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I'm not sure. It's a super specialized test. Ask the rheum to run it for sure. Along with all the IBD tests given the overlap of sxs.

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Morning, Ask them to check for the HLA 51 gene. I must remind you that not everyone with BD carries this gene, and not everyone that carries this gene is effected by BD. But it does help knowing if ur having some type of flare up. You can read more about it if you type it into Google's.

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Hi DBran

Really sorry with how you are feeling, so much of what you write leans towards Behcet's however genital ulcers also appear to be on the list, some Behcet's people get these very often and others very rarely but they have and do get them, do you think you might of had something during any of your flare ups they don't always manifest themselves as large genital ulcers.

If Behcet's has not been mentioned to you by any of the specialists you have seen then I would certainly suggest you mention it on you next appointment, you need to chart eveything you feel every day regardless of how insignificant it might seem, we have massive habits of discounting many illnesses simply because we live with them daily and they become the norm but when reviewed over a period of weeks and months you realise just how much each one can be important. As well as a chart take pictures and consolidate everything ready for your next.

Be prepared many specialist have never heard of Behcet's or they discount it because they do not know all the associated and complex illnesses within this condition, my Dr discounted me because I did not have an eye condition, do your homework and read lots about the condition and take relevant extracts to your next appointment, everyone you see do the same it will get them thinking.

Ask to be referred to a rheumatologist they appear in the main to be the specialist who mostly handle Behcet's, however this is not always the case and it might help if you can find out from your hospital which consultant deal with Behcet's, I was not diagnosed by the first rheumatologist I saw and who completely discounted my genital and oral ulcers, diagnosed Ehlers Danlos (2016), and yet 12 months later another rheumatologist who works in the same hospital, colleagues, diagnosed Behcet's. I have suffered with this condition since my mid teens and now in my 50's after spending decades going round and round specialists undergoing surgery, MRI, x-ray, scans, so many tests but the one thing I had omitted and never linked with everything was my ulcers I simply thought they were a result of everything that was going on in my body... things have got worse for me over the last 10 years or more I used to be able to manage very well with no medication, I feel I am very lucky in comparison to a great number of Behcet's sufferers who have such horrendously awful pain and discomfort with this condition, mine is so much milder I just have to try to learn how to manage myself and try different things like diet and exercise, food can be a trigger to lots of things and for me removing all refined carbohydrates out of my diet as well as potatoes, rice anything that makes my stomach and abdomen blow up.

Good luck and don't forget if a specialist discounts you ask where they are going to refer you next before you leave the room.

Gillian

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Thank you so much for your time and your response! You are so wonderful to help me out.

As for the genital ulcers (sorry if this becomes gross and graphic), I have had red bumps that would secrete discharge and be painful for days, but it never is as large as my mouth ulcers and I don't think I have seen them become ulcerations. (I don't know what I'm really looking for??) I guess, I pass off anything down there as ingrown follicles? But I also don't want to say I have genital ulcerations if I have never really definitively known what it was .

I definitely will (and have) start charting everything! Pictures and notes galore! Thank you for mentioning that.

Also, this current Gastro is the 4th specialist I have seen that actually seems like he wants to help. I've seen a Rheumatologist that checked my blood work for lupus because of a positive ANA level, but said I didn't have anything unusual. I live in Georgia, USA. I honestly do not know of any Rheumatologist near me to help/ listen to me. Where do these doctors hide??

I'm very sorry to hear how long it took for you! I am so happy that you have finally discovered your mystery. (I think the hardest thing for me would be cutting out carbs! haha) How do you keep your head up? There have been so many times I just want to stop looking. I figured I would just deal with it and the pain.

Thank you so much for your wonderful advice. I will implement as much as I can immediately. You're wonderful!

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I used heathgrades.com to find my rheumatologist. Along with ratings. If you have to drive a little to get to a urban area, id suggest calling the drs office first before the appt and obtaining blood work before hand. That way you show up, with results in tow, ready for a consulting appt, not waiting for results. They can order any test and email you the forms for Labcorp or quest. Joanne Zeis, jzeis has a list of american doctors by state somewhere on her profile. She's the best.

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i meant to also address the genital ulcers. Ive talked to a few other ladies on here, and honestly heard very diff descriptions. Ive heard very flat, very red, very white. Nickel sized. Myself, the first time i had them, there was 3 in a row, diagonally, in my inner labia. on the right side. went from small med large. think small green pea sizing. They were very deep, and were pus filled (as i would find out later- the dr's "popped" one)- as it honestly looked like little pearls embedded in my skin. it actually was not painful, i could urinate over them with mild discomfort and it was only after they drained one at the office. Negative a million times over for herpes.

The next time i had them, 8 years later, There were 7. same deal. different locations. Little pearls (HA HA) all inner labia. turns out I had 2 more inside the vagina that the dr told me about.

I would describe them same way, mine are very deep, like take a pencil head eraser, and poke it into a ball of playdoh. make the shape slightly oval. very red edge, white inner bowl. They look just like my mouth only bigger and WAY deeper. When they healed up, they healed up into white spots. I frequently like to describe my vagina as a lady bug, but only with white spots.

I am so special.

always inner labia. nothing outside. I took photos a while back but my boyfriend deleted them. SO I HAVE NOTHING. probably for the best ish, i definitely would have posted them everywhere LOL

back to more medical things: they cut one out. i went to my lady dr, she was intrigued and very excited that this couldnt be herpes. shes 4'10 so its adorable that she was all popping up and "I WANT TO SAY THIS IS HERPES BUT IVE SEEN HERPES"

she asked if she could bring in other doctors. So here I am, mid week, 4pm, spread eagle, with 3 doctors - hand on chins, making dr noises at me.

*oprah voice* BIOPSYYYYYYYY

Results came back positive for inflammation. no viral or bacterial properties.

Super painful night that night as I did not fill the pain medication BC I DIDNT THINK I NEEDED IT. HA HA

bless the pharmacist at walgreens, as I saddle walked in with tears down my face. By the time i got a bottle of water, the script was filled.

so biopsies are sort of fun/informative.

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AGAIN! You are WONDERFUL!

I went ahead and followed her too! Also, I have never heard of such things!

Okay, so mine are similar in that it gets red and inflammed about the size of a pea. They can be painful for days after it "pops", but I can't definitively say it ever became an ulcer. I guess I just never thought of it? I just thought maybe an ingrown hair... But come to think of it, I guess you can't have hair follicle on the inner labia. (I think you just helped me have a revelation!!)

GIRL, you had me DYING! I'm not trying to laugh at your expense, but I can only imagine what those doctors were thinking. I'm so sorry that you had to be on display, but I assure you, you taught them something about the human body that day. hahaha But thank you so much for sharing with me!! I'm almost positive I would have never been able to find this out myself any other way.

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Haha girl, laugh. I’ve come to have a very dark humor and am now very deadpan. It’s all positive though.

When they pop, is there a fluid? What color? How many? Are we talking a bump or a bowl?

I am assuming also other things like crohns and Celiacs and hsv were ruled out yah?

My gastro told me once that crohns can present as Labia ulcers too.

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You and I are going to get along JUSSSST FIIINNEEE. hahaha

Yes, there is fluid - like pus-like discharge, like what you would kinda expect from popping a pimple that/s cystic? Yellow-ish/Clear-ish? At most I've had maybe 2 large and couple of small? But I have also had just one. They don't come up often at all. If they happen they are gone within a week- week in a half range.

Celiac's has been ruled out 2 or 3 years ago. Crohn's was just ruled out back in December. HSV - honestly, I don't know. I would like to say yes, because of the extensive paneling (2 years ago) I requested before I got married. My gyno said I was clean as a whistle (if whistles could be that clean?). hahaha

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I mean this sounds like mine, no one else here had pus in them like mine. Both bad times (8years in between), pus. Other times, more recently, when I caught it early, they were tiny Red dots like if it was coming to the surface. My skin was tingly. I was more aware of the area down there. So I doubled up on my colcrys, sleep, and salmon and kicked it before it went too bad I guess.

I don’t know how clean your whistle is- but I got shiny bells. :P

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I'm joining the club on this hot topic. What the heck. I can't sleep bc this rancor disease has me up. My doctor squeezed stuff out the first time too when this diagnostic charade started. Said for sure not herpes. And then they didn't stop. So I feel both of you. Always in the inner labia or entrnace to vagina or internal. But mine hurt like all heck.

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Oh they’re the worst. I would wish them on my worse enemy. The last bad time, I had to drink 8 oz of water every hour on the hour to dilute my urine to make it uncomfortable to pee. Other wise- I’d scream and shake on the toilet. One time there was so much traffic on the way home(hour and half drive), I had to pee in a cup. I was at an intersection in Baltimore city, put my sweater over my lap and pray that I didn’t spill all over my seats. Light turned green and I wasn’t done- needless to say- I filled up two cups (I WAS DRINKING A RIDICULOUS AMOUNT A DAY) and did NOT spill any while driving over a pot hole riddled road.

I still brag about it to this day so-

HAHAHAHA

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Hey there- where are you? if in USA, find a rhuematologist. Call the office before hand and ask if they have behcets patients. Research and print out literature. ABDA.com is a great resource/

Remember there is no test for behcets, but that everything needs to be ruled out. Im assuming crohns, celiacs, lupus, herpes, etc all got ruled out.

Your ESR and c reactive protein will be high.

Oral and genital ulcers along with uveitis are the hallmark symptoms- but everyone is different. I dont have eye involvement. I dont always get genital ulcers when i have mouth ones. Arthritis will be there, specifically in the wrists and ankles. erythema nodosum is thing too. stomach issues are a thing,.

there is no magic fix all pill for behcets. There is a pill for ulcers and inflammation, colcrys, and it can wreak havoc on the stomach. I suggest you start on HALF a dose (1 pill a day) then work it up. I ended up staying on half dose.

BD is a TON of inflammation, as are most autoimmune diseases. Here's what Ive learned, and what Ive seen from this site that will help you regardless if its Behcets or not.

1. sleep. actual sleep, goto work. come home. sleep until work. hopefully u have someone to cook something for you. if not, eat simple (ill get to that)

2. drink water. ALL OF IT. ONLY WATER. aim for at least 100 oz a day.

3. cut all sugar and processed foods from your diet. right now. make every meal a meat, vegetable, and a fat. use Herbs. you can add fruit in later, like months later. this was actually the step that turned my life around in 10 days. literally on day 10- i started to feel better. put yourself in a ketogenic state, its incredibly anti inflammatory and will help. google that. no energy? buy chicken breast and veggies. sprinkle olive oil or coconut oil over it. eat steak and broccolli. eat turkey and cheese roll ups dipped in mayo. eat it. its going to suck for a few days because itll be like "what do i eat?!" but this isnt forever. you will end up feeling better and have more energy down the road to enjoy food. im on IG now, @bitterbiologist where i post all my sugar free meals.

im talking zero sugar. zero carbs. sugar is really inflammatory. when i eat any of it (obviously not aware of it, i get ulcers within hours, diarrhea within 20 mins, bloating for hours) i thought i had food poisoning for years. i now work in some carbs, still keeping it VERY low. I ended up becoming sucrose intolerant over the years; I still remain sucrose free though as this is my trigger.

Everything except the eye cupping sounds very familiar. I wasnt diagnosed with BD until 25 (symptoms started at 17) when I almost went septic (nothing had happened, literally just went septic over 2 days HA HA). i myself get: oral and genital, arthritis, meningitis, thrush (that was god long and for a few years since 18) and pitysporum folliculitis. I have a shit memory. but here i am, healthy now. ulcer free for the most part. all because of diet. I wish I had known it earlier. Was on 15 diff meds at one point, lost 20 lbs in about 3 weeks etc.

feel free to click on my name for my other posts, as ive written a ton on here with food posts and advice.

please keep us posted, and stay positive. I know you dont feel like it, but keep a mantra. mine was "this is temporary."

one day at a time, okay?

xoxoxoxoxo

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You, my friend, are amazing. Everything, just everything, you have told me is speaking to my soul. Thank you for taking the time to respond.

Funny, that you mention inflammation because that is literally all the doctors talk about with me. I'm a relatively healthy, 26 year old female, that has astounded my primary with how much inflammation I carry. My Gastro has also instructed me NOT to take NSAIDs to reduce inflammation because he thinks causative on my intestinal ulcers. (I only take NSAIDs for my monthly visitor, if I even take it then.) He refuses to put me on anything for inflammation until May so he knows my ulcers are not from NSAIDs. I think he's grasping at air.

I can most definitely do everything you're recommending, except my heart lies with carbs. Ugh! BUT I will do it. I will try anything that will hopefully alleviate any of my symptoms.

Gosh, you're stuff sounds rough!! I am so glad that you have found the face of your mystery illness. I pray that I can find relief like that, even if I'm not diagnosed with Behcets.

I do live in America and I am a Caucasian female. Is this even remotely probable for me to have? All the educational articles have said primarily Middle Eastern and Asian ethnicities??

Thank you for all your help. I genuinely appreciate it.

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I’m 29 f Baltimore Maryland. White bitch aka Italian and Lithuanian is apparently my heritage. Sooooo 🤷🏽‍♀️ Where are you? I have also found 4 other white people in America, 3 female one male via ig and fb.

Cut the carbs. I’m serious. Look into keto diet. I will help you with meal ideas. At least get into a kwtogenic state to reduce the inflammation. Then when stable work back in your carbs. Every time I flare, I cut the little carbs I have, and boom. Better within days. BUT- the thing about keto is, you can’t have a “cheat day” like that. Once you’re in a ketogenic state, aka your body is no longer using glycogen aka carbs as fuel, it will use body fat and produce ketones. If you eat say, an ice cream, it will kick you out of keto and will take a day or so to burn through those carbs and get back to where it was. Google it.

10 days.

See if you feel even an ounce better on day ten. The first 3-5 are rough though. It’s not easy, but when I was facing my 18 drs after dr, if I had someone tell me this simple simple tool- I would have done it earlier. I wasn’t 100% on day ten- but for me to remember that day out of a lot of shitty days, i remember crying and feeling better. I had some energy. Fast forward- I never imagined how healthy I could be, nothing changed except the diet. I’ve cut medicines because of it.

Granted, I now catch my warning signs wayyyyy earlier than I used to. Also I avoid stress. I say no. I give zero fucks. I sleep. Gotta do what’s best for me. Isn’t fair to my bf if im sick all the time because I over obligated myself to others.

I’m here for you- with whatever you need. Ideas, recipes, bounce theories, holla. Dm if ya want. Or text. Find me on ig. :)

Xoxoxo

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Stress and anxiety make everything way way worse. Cut th carbs. I second that times a thousand.

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YASSSS!

I'm in Georgia! I don't really have a good grasp of my background. I know some family came from Germany and Ireland/Scotland region, but I can't say much more about my heritage because I have NO clue.

I may have to find you and follow your stuff because if I really do have this stuff, I'm gonna need a WHOLE lot of guidance. AND the fact that I'll be super reliant on your recipes if I cut carbs (Still really upset about that!) hahaha

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I used to live in auburn and Decatur :)

Feel free to dm me, find me, whatever u wish. I’m on snap and ig. The important thing is that you know you are not alone in this battle. You will have defeated days. You will kick ass some days. But you are not alone in this! I’ve learned slow and steady wins, as well as taking one day at a time. One day you’ll look back and be like wow- look where I came from.

We got this!

Xoxo

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DEFINITELY WISH I COULD LOVE THIS!

Thank you. Look for me soon! You're amazing. *heart*

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White female NY here... rooser1 has been a huge help to me! Thank you girl!

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Hi there! I live in the USA, south of Seattle Washington! I just want you to know I have not been diagnosed yet I’m praying at my rheumatology appointment tomorrow I will be! I’ll let you know 😊

I’ve been having symptoms for 28 years and was told recurring shingles.

Behcet’s can mimics shingles rash.

I have now been diagnosed with uveitis and have vision issues 20% less blood flow in my eye.

I have had so many kind and helpful people on this site! They have given me the support needed to get this far.

Rooser1 ESPECIALLY.. she has been the hidden gem! 💎 😊 I found the the UK Bechet’s Society page has a lot more information than the American site.

I have made up a binder full of Behcet’s information, my symptoms, doctors and diagnosis (Good and Bad) to take with me to my appointments.

My Gp doctor practices functional medicine and you may be able to find one in your area look at this site for a doctor in your area and just google functional medicine to see what it is all about.

ifm.org

I have done a lot of testing micronutrients blood tests, organic acid test (oat testing From Great Plains Labs) this checks your toxins in your system and Canadia (yeast) . I also did a food allergy blood test. (Read through my previous posts) I also did the 23 & Me Health & ancestry. This should show my genetics pathway and also my ethnicity. I’m soExcited to get those back.

So since I found out the toxins results my doctor put me on a hard detox program. No gluten, sugar or dairy. Eating a Paleo/autoimmune plan and no high oxylates foods (i was eating what I thought was healthy) (spinach kale, berries, sweet potatoes) I’ve had a few cheat days I’ve been doing this since January 1st 2018. But I did go 10 sugar & dairy free 21 day gluten free before I cheated. Then it was only only picked one cheat and watched how I felt for next few days. Then next cheat weeks later, I picked something else.

My motto has been this HOPE it stands for

H-hold

O- on

P-pain

E-ends

So I know my pain is going to be ending soon and this test will become my Testimony..

Keep staying positive, I believe God is my healer and he will always take care of me. 🙏🏻😊

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GOod luck today!!!!! let us know!

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YES! Firm believer that God has got you!

Good luck today! Let us know how it goes please!

And thank you for such a great tip! I will DEFINITELY look into it. I need something solved and I just wasn't looking in the right spot. Thank you so much!!

Is your GP a DO? MD? (like credentialing-wise) I just am trying to get a since of what I need to look for.

Love the motto. Gonna have to create something myself.

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My gp is actually a ARNP (nurse practitioner) there are naturopath, and md. That site will list who practices in the INSTITUTE OF FUNCTIONAL MEDICINE.

today’s appt was ok, just talked she took down information, ordered a big lab work up, she’s also gonna call and talk to the Retina specialist about my eye. It’s just hard when you can’t work and just want answers.. I see the neurologist next Friday and then rheumatologist that following Monday so not to long.... I guess 😏

Thanks for asking I’m just feeling discouraged and frustrated. I just want to feel better!

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God's got you! I understand frustration, but you're getting closer! My prayers are with you!!

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THANK YOU! I appreciate it More than you know! That’s all we can do it put our trust and hope in God!

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Whatever you can do, try to get as many good consultations as possible. And if you hit a dead end...keep going. A really good internist who has your back is CRITICAL. I had someone constantly (and still is) fighting for me. I call him every time something doesn't make sense. He advocates for me and has given me the strength to keep pushing for a proper diagnosis. Again a good GP/internist will make or break your care. Because in the US they are doing a lot of the day to day care for you between rheum appointments.

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I used patient first (our urgent care) and set them as my PCP, as they have many locations across the state and US, and therefore my medical record could be accessible anywhere and pretty much anytime (their hours are 8am to like 2am). Also- it saved me a hospital copay as those are 150$, and my PCP visits are $20. Ive definitely gotten some jerk doctors there, but I did see an older guy and a young PA who were open to the idea of Behcets when I mentioned it. Then I googled up my rheum. with reviews.

I find as long as you have a well written time line, with dates, medications, symptoms, people tend to take you pretty seriously. My mother, tbh, ive been with her at her Dr's appts, and she is a dr's nightmare. Very vague answers, the type of woman who checks all the boxes for things she could have maybe ever felt. I see why doctors sometimes just push a pill. Hell- if YOU DONT KNOW-THEY WONT.

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Thank you so much!

I need someone who remotely cares about my symptoms and I'm just not sure if I have that. I will definitely look for one.

I'm so happy that you found yours!!

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