So sorry for the lengthy post! I have a range of issues which have been ongoing for many years like ibs, distended tummy (I looked 6 months pregnant on most of my teenage photos). I have small mouth ulcers a lot. I developed genital ulcers which I was told it is probably herpes though not definite as swab test was negative. I was then told subsequent times it was because I was overweight/sweating/rubbing of underwear etc. Every time i had an illness it took longer than average to recover. Fast forward to 3 years ago, I had covid and it completely wiped me out. I had chronic fatigue which meant I couldn't work for the best part of a year. My GP run a lot of tests and since been diagnosed with hypothyroidism/low vitD/B12 my esr/Ana and crp levels fluctuate so nothing is ever conclusive. I have been prescribed antihistamines for sensitive skin responses a nasal spray for sinus issues and omeprazole for reflux. I have random small bruising to my legs and stomach. Red acne like spots appear on my legs mainly. Aches and pains in my knees/ankles/elbow/wrists and sometimes fingers and toes. I feel like I have periods where I am managing then have episodes of extreme fatigue. My GP mentioned Lupus at one point though because one of my elevated blood tests had gone down he said it wasn't that. I have red cheeks constantly which appear brighter during a symptom dump. I think my GP thinks I am mad. The problem is they only ever deal with one thing at a time which means there is never a link in smaller issues. I found a letter in my mums things when she recently passed from the behcets support group which I never knew she had been diagnosed with. I googled it and it has thrown a lot of questions up for me too. I haven't yet had chance to mention this to my GP as I'm mot sure how to approach it.
Could this be behcets?: So sorry for the lengthy... - Behçet's UK
Could this be behcets?
Sorry you’re going through all that. I have the majority of your symptoms too and was diagnosed a few years ago. Would recommend going to your GP and specifically asking to be referred to a rheumatologist for assessment. They can biopsy the red dots on your legs and also the ulcers (be warned; the genital one is sooooooo painful!!). You can also get a genetic test HLA-B51 which is relatively conclusive (I was positive for that)
All the best - hope it goes smoothly 💕🌷🌸
You need to skin patterns test. How has your vision been? Have you gad uveitis flares? HSV & Cytomegalovirus tests needed.. If your rheumatologist agrees then Riruxan infusions ( 2 infusions 2 weeks apart every 4-6 months) wtionould definitely improve your condition. If you need TB test prior to infusion remember false + likely because similar to skin pathergyr test. Follow up chest xray should be negative prior to starting Rituxan. Hope your feeling better soon.
Hi, I totally understand your frustration. I myself started with genital ulcers in 1992. I was told it was infected thrush. The second bout was worse and agony so the GP took a biopsy saying I had herpes but when the results came back they were negative. Over the years the mouth ulcers started, then IBS symptoms, severe gut pain followed by vomiting and / or diarrhea. Next balance problems , falls, burning on my hands and feet, struggling to control body temperature, joint pain, Underactive thyroid, high blood pressure, urinary incontinence, Pernicious anaemia, skin rashes, chronic fatigue. I struggled on for years until 2009 when I was in such terrible pain I could not weight bare, covered in a rash and was admitted to hospital. Initially they thought Leukaemia but then said it was a virus and sent me home to rest. Rest did not ease it. My GP then thought I might have zlupus or Lyme Disease. I was referred urgently to a Rheumatologist who diagnosed Lupus. Subsequent Rheumatologists have altered the diagnosis to Bechets, back to Lupus, MCTD, UCTD and one even “ hysteria”. My current Rheumatologist hasn’t ruled out Lupus but feels my presenting problems are more Bechets. It is a frustrating and often demoralising to get a definitive diagnosis, my advice to you would be to insist on a referral to a Rheumatologist. I wish you the very best of luck xx
Thank you so much for your reply. I have made a diary of symptoms and included some photos. I have a face to face appointment with my GP in a couple of weeks where I will discuss further. I will request a referral and take it from there. It is a very complex issue and I think from what I have read that it is tough getting a definitive answer x
Yes it is tough and people rarely know what you are talking about. My new GP said what is this Bechets? Some psychological disorder? 😧🤬. When I started to explain she said oh AI is it, easily remedied just take azathioprine?? I was speechless. Let us know how you get on with your GP xx
Thank you everyone for your comments. To be honest I had never heard of it until I came across the paperwork of my mums. I googled it to see what it was and it definitely resonated with me. Hopefully my GP will either have some understanding or at least knowledge and if not refer me somewhere that might do. I will update once I've spoken to them.
Hello,
Firstly sorry for what you are going through, it’s not easy. I have had some similar symptoms, luckily my BD is classed as mild, and mostly only affects my skin and mucosal tissue. I was diagnosed about 2 years ago after a lot of yes you do, no you don’ts. I really started to be unwell about 14 years ago (age 38) ulcers, fatigue, headaches, and lots of other odd things, it wasn’t until I started getting red marks on my legs after 6 years that I went back to my GP and they mentioned vasculitis, I googled it and found a link with Behcet’s, I then remembered the specialist who looked at my first genital ulcers giving me a leaflet on BD, (I had dismissed it at the time). I was lucky that my GP was fairly sympathetic and referred me to the Behçet’s Disease Centres of Excellence in London (there are two more in Liverpool and Birmingham). Before this I was diagnosed with CFS, stress and depression and had tests for limes, thyroid, sjogrens and a host of other things.
I think the fact your Mum could have had it speaks volumes. So with a list of symptoms and that knowledge you should be able to get your GP to refer you. I would try one of the centres of excellence as that’s all they do, I would think a rheumatologist would only deal with part and f the disease. A few things to remember:- almost everyone has a different collection of symptoms! - On average it takes 12 years to diagnose (I expect almost everyone here has been wrongly diagnosed with something else at least once before a Behcet’s diagnosis) - You can have it alongside other illnesses (which again makes it difficult to diagnose) - Don’t get disheartened, it’s a very long process - in my experience symptoms can come and go, and you can develop new ones too - lastly definitely keep a diary and take photos, it helps you as well as the consultants.
Hope this helps.
Good luck x
Have you had an ANA titer run on your blood for autoimmune conditions? Basically they dilute sample tissue until they can visualize the pattern. My ratio was 1:640. May be worth googling ANA testing. Your GP could also be doing the bloodwork up that a rheumatologist would do first...that could get you to see someone faster. I guess the referral to a rheumatologist is key. You sound like I did in my youth as well with belly distension. Believe it or not, my dentist actually thought I had Behcet's first. I see a University Medical team as my oral conditions are just a subset of really poor health. It was after suffering a TIA and then getting positive oral and vaginal biopsies that gave me the diagnosis. Shortly after I contracted COVID, I became very ill and lost 40 pounds in 6 months. I have an additional diagnosis of Relapsing Polychondritis and some IBD and paralyzed gut. To control all diseases I know my Dr would want me on prednisone for life, but I do not tolerate it mentally (ie no sleep). We also know the side effect of prednisone aren't great, but most meds aren't great anyway for these conditions. Your symptoms sound spot on and especially with the bruising components too. I take a weekly methotrexate injection and LDN 3mgs daily. Prednisone is only for severe flares. We may have finally gotten things under control a bit to avoid the progression. Relapsing Polychondritis with Behcet's is actually called MAGIC syndrome. Doesn't seem so magical to me!
Hi there-I found this article with what tests Rheumatologists will want. Maybe your GP can get these run for you! Then you'd have a baseline start for a referral and if anything comes back whacky, you'll get seen sooner. As mentioned before, you'll see the reference to the ANA titer. I was negative for everything but this.....well that and a ton of white blood cells at the time I was first tested.
Thank you everyone. So much information and advice here. I'm very appreciate of you all taking the time to respond. I will feed back all this to my GP and see what if anything comes of it
Hi I’m sorry to hear about what you’re going through. I have so many of your symptoms including uveitis when I was first diagnosed and crohns symptoms. It was the red cheeks you mentioned that reminded me that I used to have before all the drugs ( steroids, mycophenolate, vedolizumab) ! If you can get your gp to refer you to one of the centres of excellence like the good advice from jollyhs, as they can prescribe triarosol mouthwash and it’s amazing for mouth ulcers . I have an excellent rheumatologist based at Sussex county and she said you can only get it from there. It was devised I think by the behcets team. My son has been showing random signs of what looked remarkably like autoimmune and when I mentioned some of his symptoms to professor fortune at the centre she told me to get him referred. However when he asked the gp he was dismissed so I had to email them, now been done so don’t give up? If you are diagnosed however you will spend all your time explaining ! I find that the ambulance crew or consultants are Googling behcets!
Fingers crossed you get answers soon!
Hi you,
Your symptoms sound very familiar. It took me 26 years to get diagnosed!
My gut issues resolved with gluten and dairy free diet. And mouth ulcers and vaginal ulcers much better with more veg, and supplement of methylfolate (natural form of folic acid).
I've found probiotics to be very useful. Been experimenting after reading 'Super gut' by William Davis. Also graded exercise is really helping. I E gradually building up but stopping before you get tired. My initial runs were 4 minutes and I have now built up to 2 miles 3 x a week.
I did have a big flare 2 years ago that needed steroids and the eye hospital to calm it down. (Uveitis, joint swelling, erythema nodosum) It took a few years to get well again. I was offered drug by Rheumatologist but was quite determined to stay off the meds. On reflection I think a course of antibiotics / tonsillitis triggered that flare.
Good luck with getting a diagnosis, what ever they find it would be worth looking into diet and lifestyle while you wait? Works for some of us not for others.
X
Can you apply for a copy of your mum's medical records, I was able to get a copy of my late father's after a post mortem found a very enlarged heart, something I felt confident he never knew he had. I wanted to know more due to my own heart condition and was advised all his children should get tested for an enlarged heart. My father records showed he was being treated for many Behcet’s associated conditions without having a diagnosis Having your mum's records may help you learn more about her health conditions and what medication she was being treated with. I would also discuss your mother's Behcet's with the GP.
I would also suggest you keep a diary for your symptoms, take photographs of everything, especially since most of my symptoms had disappeared by the time I had my GP appointment. After decades I finally got in front of a rheumatologist and gave her a list if my recurrences, showed her photographs, she checked me over and immediately diagnosed Behcet's, I could have cried it was such a relief that someone had helped put a label on all of these symptoms.
As far as a skin test, blood tests and genetic testing are concerned I was advised only 4% of the population ever test positive for the condition this way and the genetics professor declined to do them based on all of my symptoms and diagnosis from the rheumatologist. And that the condition in my case and many others is diagnosed based on a series of related symptoms and most results are positive based upon you having family coming from regions such as areas as Turkey as it is particularly common in the Far East and the Mediterranean basin, where Behcet's rates are much higher. I have no immediate link to these areas. He went on to say that if diagnosis was based upon a positive genetic test for everyone most Behcet's diagnosis would never be made and therefore symptoms and a positive history of a patients life for associated conditions is the best way.
At the same time I was told about Behcet's I was diagnosed with Ehlers Danlos, I knew I was hypermobil but not that a condition existed or the problems associated with the type of Ehlers Danlos I was diagnosed with, their are 13 different types.
Good luck getting answers, never give up and push to see a rheumatologist or whatever specialist manages Behcet's in your area, find out exactly who it is at your hospital. Do not be put off, being sent to one specialist after another who have no idea about Behcet's, just keep saying where will you refer me to next. My first rheumatologist had absolutely no idea about why I had oral and genital ulcers, he was not interested and made no link to Behcet's but thankfully 6 months later I had an appointment with his colleague and her diagnosis was Behcet's.
I think it's possible you have Behcets, but I am no doctor. Ask your GP to refer you to a specialist, as most GPs don't know much about this illness. Good luck.
I felt like I could have written your post(symptoms and time), it is sooo frustrating and I hope you find help and feel better soon 💐
Have they tested for Celiac disease ? Causes absorption issues , low vitamins, iron etc. Many other symptoms . Sometimes a rash which can be misdiagnosed as Herpes. - Dermatitis herpetiformis.
Oral ulcers in Celiac too.
hi Frustratedlil, I feel you frustration. I have had alot of similar symptoms to you and after 8 years, I have only found out I have a gene which is linked to Betchets. I think the fact you found a letter from the Betchets support group is a tell tale sign.
Have you asked to be referred to one of the Betchets Centres? You can also ask your GP to be referred to the Amyloid Centre in London, as it’s a national centre and they will do all the necessary tests and if they think it is Betchets, they will tell you to go to the Betchets Centre. I found them really helpful. There is a few months waiting list though.
Take care
Suzy
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