In desperate need of help and advice about Beh... - Behçet's UK

Behçet's UK

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In desperate need of help and advice about Behcet's.

ChangesAA profile image
14 Replies

Hey all, I'm desperate for some advice about Behcet's.

To run you through my story in brief.

Diagnosed with Pars Planitis/Intermediate Uveitis in my right eye aged 12, deemed idiopathic. Fast forward 12 years, I'm now 24 and suffer in both eyes.

Since April this year I've been suffering from numerous debilitating systemic symptoms. They include, extreme fatigue, weakness all over. Excruciating stomach pain and cramps, painful spots which for on the upper part of my body. I constantly look pale, washes out and ill.

I also suffer with recurrent oral ulcers but I don't present with any genital ulcers, whatsoever. My Opthamologist has hinted at Behcet's being a possible and probable cause for my problems as mostly all other things have been ruled out. I will run you quickly through various tests I have had done.

CBC normal (always has been)

ESR within normal range (Never above 20) CRP <5 did reach 13 in May but went down to 8 and then lower shortly after.

ANCA negative

ANA negative

ANTI-ENA negative

ACE normal

Urine normal

HLA-B27 gene negative.

MRI brain scan normal.

Bone scan normal.

I've not yet had the HLA-B51 gene looked at yet.

Having an abdominal MRI with dye in 2 weeks time to take a closer look at my small intestine, bowels and pelvis area.

If anyone could get back to me I'd appreciate it so much.

I'm only 24 years old, I'm suffering every day with symptoms which leave me bedridden. I'm fearful of the worse, that being death from an underlying autoimmune disease such as Behcet's being left untreated. I'm getting worse every day. I usually feel like this (symptoms wise) for 3-4 weeks at a time before improving and then relapsing again 1 month later.

Thanks for your time.



14 Replies
Legomum profile image

So sorry to hear how much you are suffering Mike. Welcome to the behcet's community online! I am sure you will improve....bedridden at 24 sounds truly awful.

Many more questions for you..... How did the ophthalmologist treat the uveitis in both eyes? And how did he explain it, especially if recurrent eye problems...what were the differential diagnoses apart from Behcet's?

Does the ophthalmologist have any experience of patients with behcet's , especially as it is a rare disease? Just wondered if it all settled with steroid eye drops or other treatment?

Could you access a behcet's specilaist: we have centres of excellence in uk where local GP can refer and they are funded centrally. If in the Us, there is a behcet's patient who has compiled lists so can recommend some of the best people. Her name is Joanne Zeis, and she also wrote an award-winning book on Behcet's that is a very useful guide for you, and for your clinicians. Check out joanne's website too.

Also just to get more replies on here, please add the "padlock" to you privacy settings . Go to your post title and edit do only the community can read and reply . Otherwise anyone can google it and it shows up!

All the best

ChangesAA profile image
ChangesAA in reply to Legomum

My Pars Planitis is under control with the use of Ozurdex implants in both eyes. I'm intolerable to immunosuppression which is a shame due to the remission percentages and also the likelihood that the underlying disease and my Uveitis is a manifestation of an autoimmune disease which would likely require immunosuppressive therapy.

I'm wondering if anyone on here with Behcet's could get back to me on my symptoms described. Extreme weakness, extreme fatigue, feeling faint, painful upper body spots and recurring oral ulcers. Does this sound like a classic Behcet's presentation?

I'm going to try desperately to get a referral over the next 2 weeks to visit the Birmingham clinic of excellence. I want this diagnosed sooner rather than later as it's been going on for far too long now and still no diagnosis has been made due to normal blood and scan results.

I'm very fearful of death from complications left untreated. For example Aneurysms. I know there's something going on, my Opthomologist is one of the very best in the UK and he's suspicious of Behcet's being the cause.

I've tried to put padlock on the post but I'm not sure how to do it even after your polite instructions.

Hopefully others get back to me and let me know their opinions. How they were diagnosed etc etc.

Vey scared, very lonely and very depressed right now. Frightened to even go to sleep due to how poorly I feel.



Legomum profile image
Legomum in reply to ChangesAA

Don't know why I assumed you were in America sorry...maybe CBC instead of FBC!!

Your raised crp and your symptoms point towards behcet's. One of the trustees of behcet's syndrome society - Rachael Humphreys - was interviewed by her local newspaper to raise awareness of BD, and they put in some good photos...take a look as that article may help you. Wither google or read it via the link on the charity fundraiaising page set up this summer. Read the description down the left side and her article link is at the very bottom of that :

The delay in diagnosis , as if "waiting " for the suffering of genital ulcers, is ridiculous. Many behcet's patients get their diagnosis confirmed after a decade of symptoms and pain which is a tragedy.

How did you choose Birmingham over London C of E, or just geographically closer? I see Prof Stanford for eyes in London and they have rheumatologist, psychologist and neurologist in weekly Behcet's clinic led by immunologist (doctor and dentist) prof fortune.

What makes you "intolerable to immunosuppression" as there are so many different options out there? Best hope lies with the uk Centres of Excellence takings holistic approach, reviewing your entire history and helping you.

kathleen71 profile image
kathleen71 in reply to ChangesAA

Take two ibuprofen morning and night as it helps with blood clots and is usually very safe.

Legomum profile image

To add a padlock ( and attract more replies from patients) :

Edit your post by clicking on title of your post "in desperate need of help..."

At the bottom, below the text box it asks; "who is this for?" Tick "community" as I am sure that means this behcet's syndrome society forum only. ( The other option is "everyone" which means all the charities on health unlocked site, plus anyone typing key words into search engine or google ).

Then clck "submit"

hope that works!

ChangesAA profile image

My raised CRP was only for 2 weeks 5 months ago and only minimally raised which could have been anything from viral etc.

My question is, I don't present with any genital ulcers whatsoever and I hear these happen in 70% of cases. I'm going to get tested for HLA-B51 gene in 2 weeks time as well as an in depth view of my bowels and small intestine.

I'm getting a referral to go to Birmingham as I heard this one is the best clinic out of the 3. Do you suggest London is the best one? I can do any of them I was just told the one in Birmingham is particularly good.

My main fears are Aneurysm and CNS involvement as I suffer hugely with abdominal pain and numerous CNS symptoms such as lack of coordination and dizziness. I'm praying these are not due to the Behçet's disease as my understanding is people with CNS and gastrointestinal involvement are at high risk for fatality. I've been on Benzodiazepines for 7 years now so I'm hoping that my CNS symptoms are due to side effects from medication.

I had a standard abdominal X Ray last week in Hospital with normal results but that was without contrast. I've also had MRI's of my brain and spine with normal results.

My mouth ulcers are very recurrent but I wouldn't describe them as "painful". They are small ones and usually cause severe bad breath. They disappear after 2 weeks.

They have tried immunnosuppression for my Uveitis numerous times and my body doesn't agree with it.

I guess I'll have a better understanding when I attend these clinics. I seem to have 3/4 majors on the criteria. Posterior Uveitis, Oral Ulcerstion and folliculitis.

Hoping to here back from anyone whether they believe this sounds like Behcet's to them and with which clinic I should attend.



ChangesAA profile image

Does Behcet's seem likely here?

Legomum profile image

Mike- Please add the padlock to your post and you will get more replies

jzeis profile image

Hi Mike, I'm wondering about the fact that you have non-painful oral ulcers. I've had BD for 35+ years and have been reading BD-related research for at least 15 years, and our oral ulcers are always painful (nd often *severely* painful). There are other illnesses with non-painful oral ulcers... I'll try to post a list after work tonight.

Joanne Z.

Jaxxi profile image

My mouth ulcers are not usually painful. This may be because I had them since early childhood and learned to block the pain, perhaps. I get crops of many, tiny herpetiform ulcers that make my mouth sore and swollen, but they are not deep and they heal fairly quickly. The oral specialist I saw at the Birmingham CoE said they are less usual but not atypical in Behçet's.

Mike, one of the things that helped most in my diagnosis was photographs of the ulcers and skin lesions. I put the dates on them to show how often they were coming. The folks at the CoE said they were really helpful.

Try not to worry too much about dying. Many of us have experienced gastrointestinal problems and CNS-style symptoms such as you describe, that have gone untreated for many years. The average Behçet's diagnosis took 15 years before the Centres of Excellence were created a few years ago. If your MRIs are normal, you can probably safely assume your dizziness and lack of co-ordination are not due to irreversible neural damage. Make a note to talk to the CofE about it. I have similar issues and normal MRI. I think my 'numb-and-stumbly' episodes are due to a combination of fatigue, inflammation (possibly involving some neural pathway) and possibly migrainous activity.

The body has a fantastic capacity to heal itself, even under the onslaught of years of chronic illness. If you make sure you are getting the nutrients you need to heal up after your episodes of illness, (whether it be Behçet's or something else) you will be giving yourself the best chance of getting the most tricks out of the hand you have been dealt. Fresh air and gentle exercise really can work miracles too, even if a stroll round the garden is the most you can manage. Over the years I have been bedridden 5 times for periods of up to 6 months with no medical treatment. All I had were 'natures remedies'. But I have always bounced back by doing a little more every day to increase my strength and thankfully have been able to lead a very active life in between those grim episodes. Getting better after a long spell of extreme debility is painstaking and often frustrating work, but it's worth it in the end and definitely makes you a stronger, wiser person in the long run.

Perhaps you could make a special appointment to talk to your GP about your depression and loneliness. I know it's hard to get to sessions when you are ill and exhausted, but a 'talking treatment' such as CBT could be key to sorting out a programme of coping strategies that do not depend on benzodiazepines.

Good luck on your journey...

Stubby_10_toes profile image

Hello Mike. You aren't alone . I know the feeling of what ifs.

But it appears that you are on things and getting educated. I myself needs to have more work up done. But one thing pops up nearly every time I have bloodwork done is imflammation. I remember asking my doctor where was the imflammation and he shrugged his shoulders and said somewhere. Hmm. Ha!!

So time has marched on and I understand why he wasn't able to tell me. It's pretty much everywhere. 😏 . I also have a problem with anemia. I haven't checked with anyone here in this site to see if that is also connected with BD.

It probably is as this condition affects everything. I was just into my eye doctor for an overdue exam and new glasses. I do have cataracts but no glaucoma yet. I forgot to ask him if I had inflammation in my eyes. And like an idiot, I did not tell him about the Behcets. Why? I'm not sure. But I am going to call and tell them so he knows. I was seen by quite a few specialists before I ended up with a rheumatologist . And he said in all likely hood that I had BD. I'm tired all the time.

I just feel run down. There's so many things I want to do and can't.

To top it off, I'm will be having back surgery in the next month or so. I'm Type 2 diabetic also. I'm not sure where the fatigue comes from sometimes.

I believe I've had BD for a long time. Based on some things that I've experienced over the years. Please take care and know that there's folks in here that can help you get through this. Even if it's just a word of encouragement or just to say hi.

Blessings to you! Stubby_10_toes!! 😊

kathleen71 profile image

Hi, get your white blood count done as this is usually high . It has taken years of suffering and doctors not knowing to finally doing the research myself so I could tell doctors what is wrong with me ! I wondered with every good day if I was going crazy. Do not give up, demand the tests and a referral to a immunologist and neurologist.

Dandan15 profile image

Hi Mike I’m sorry you are going through this at the moment, I’m not sure I can be of much help with regards to Behçets but I do have aspects of a similar medical history to yours so thought I would share my story and see if I can help in any way.

In 2014 (aged 25) I woke up with what I now know was uveitis in both eyes. This followed with a diagnosis of aseptic meningitis and I was hospitalised for 10 days. I was told this too was idiopathic but I suffered another 14 episodes of uveitis that year.

To cut a long story short - I self referred to another local hospital and managed to see a rheumatologist who ran all blood tests and everything came back as normal range.

During this time I too was bedridden for a few weeks at a time and then ok for a few weeks only for the fatigue and weakness to take over again. I had to quit my job as a teacher as I was so unwell. My reoccurring symptoms being, extreme fatigue, large ulcers on tonsils and roof of mouth but sometimes not overly painful, uveitis (now under control), joint pain, painful pustule like spots, rash across my cheeks aseptic meningitis a further 3 times and very bad headaches.

I too have not suffered from genital ulcers either as of yet but I do get reoccurring tonsillitis/strep throat.

My HLA B51 test came back positive this year and after a day in the sun I had a rash biopsied on my back which then led to my diagnosis of lupus with secondary behcets.

I am now told that all of my tests were within normal range because the disease had not manifested fully at the time of initial testing. Slowly my blood results are changing and they are starting to see antibodies relating to lupus.

I wonder if you could be going through this too?

Have they ran an Autoimmune panel (I think that’s what it is called)

A consultant once told me that you shouldn’t really get uveitis in both eyes without something driving it like some sort of autoimmune/auto inflammatory disease.

I have only started to feel better once started on hydroxychloroquine for the lupus and colchicine for the behcets. I was also started on immunosuppressants and although they were hard to tolerate at first once my body had adjusted I felt an improvement almost immediately.

This may not have been much help but hopefully it may be something to think about!

Hope you start to feel better soon!


Magl profile image

Mike I don't have much experience, since I'm here because my niece was diagnosed with Behcets, but as I'm doing a research on other ways to address inflamation in the body, there is a big link between leaky gut and autoimmune disorders. Try to find also a doctor of functional medicine, along with your Behcets doctor. Maybe you can check if you have leaky gut which can cause the inflammation in the body, fatigue, and can be healed with diet and probiotics and some nutrients.

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