Hi all, if anyone could help it would be really appreciated.
Currently undergoing tests as rheumatologist is querying Behcet's. I have a complicated medical history,just to add another ailment, many symptoms are now pointing towards Behcet's. I have extensive DVT and occlusions which I'm on lifelong anticoagulants for, headaches, migraines, small pus filled pimple/spots on legs, and painful swollen knee joints are a few more of the Behcet's related symptoms. I have had 2 "flares" of mouth ulcers, one of which lasted almost 4 months, they were constantly appearing and fading, only to be replaced by new ulcers. These ulcers were on the wall/ sides of mouth and also my tongue had a lot of ulcers/sores, at one point was causing so much pain that it was hard to eat, I lost 10lbs in 2 weeks. The second flare started last week and the mouth ulcers are getting worse by the day.
However at the appointment I was told quite bluntly that tongue ulcers were not a symptom that contributes towards a Behcet's diagnosis. Is this true? as from what I have read whilst researching it has stated that tongue ulcers are mouth ulcers and therefore a symptom of Behcet's.
It's confusing me as I don't know what is correct,
I think surely a Rheumatologist that is aware of Behcet's would know if tongue ulcers were a symptom, but many other sources say the opposite!
Sorry to have gone on a little too much, but if anyone could help or advise me either way it would be greatly appreciated.
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eitak92katie
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Hi there...it can be frustrating trying to get a diagnosis for Behcets and sometimes we have to find the right Doctor to diagnose it. My consultant that diagnosed me used to say things like "you don't get that with Behcets" but over the years he has come to realise we don't all fit into the same bracket.
I get tongue ulcers with my behcets and get them on the sides and under the tongue and also the sides of my cheeks and at the back of my throat.
I also get the pus filled pustules on various parts of my body and it's called Pseudofolliculitis, which is also a symptom of Behcets...I have attached some links to the Behects Syndrome Society factsheets in case you haven't seen them
You could get your GP or the Rheumatologist to refer you there.....other than that, if you don't live in England it might be an idea to print of the factsheets and show them to your Rehumatologist or ask people on here of experienced Doctors in your Country.
I do hope some of this helps and it can take a long time to get diagnosed as it is a process of elimination and not specific tests. Doctors that have experience of Behcets are usually the best people to go to as other Doctors tend to just look at the diagnosis criteria...which isn't always that straight forward.
Hi, I was diagnosed with Behcets in 2011 and ulcers on my tongue was very common for me then, fortunately I suffer with them a lot less often now as my medication is keeping many of my symptoms at bay. I hope you get some relief from them soon xx
Andrea has already said it all. I have Behcet's and also suffer from ulcers on my tongue, and all over my mouth, for that matter. Good luck with finding your diagnosis. As Andrea has said, we do not fit into any convenient little box, so looking at the symptoms you have suffered from, I would say that if you get to a vasculitis unit, or one of the centres of excellence, you will get some positive outcome.
Here's some information from the American Behcet's Disease Association website (it also includes a picture of a tongue ulcer: behcets.com/site/pp.asp?c=b... )
"MOUTH:
Painful sores in the mouth called “aphthous ulcers” (known as oral aphthosis [af-THO-sis] and aphthous stomatitis) affect almost all patients with Behcet's disease. Individual sores or ulcers are usually identical to canker sores, which are common in many people. These sores are usually a result of minor trauma. They are often the first symptom that a person notices and may occur long before any other symptoms appear. However, the lesions are more numerous, more frequent, and often larger and more painful. **Aphthous ulcers can be found on the lips, tongue, and inside of the cheek.** Aphthous ulcers may occur individually or in clusters, but occur in virtually all patients with Behcet’s. The sores usually have a red border and several may appear at the same time. They may be painful and can make eating difficult. Mouth sores go away in 10 to 14 days but often come back. Small sores usually heal without scarring, but larger sores may scar."
The Johns Hopkins Vaculitis Center website also includes the tongue as a possible place for mouth ulcers:
Hi, so sorry to hear of your struggle for a diagnosis but it's a common one especially here in the US. I have ulcers all over every surface in my mouth and that is what has lead my dr to suspect Behcets after struggling with so many other symptoms. It seems that there is more known in the UK than here. I have been using unrefined coconut oil to give me some relief for the pain of those ulcers and it also works to fight the bacteria that can lead to perio problems. The oil has worked better than all of the meds they gave me. I keep hoping to hear of some clinics here in the US that work with Behsets but I have yet to see that.
Hit him over the head with a Behcet's textbook...no,JJ! Like the others I will tell you i get them on the inside of lips,inner cheeks, gums, top of tongue, under tongue, sides of tongue and tip of tongue. As well as back of throat and beyond i believe :/
Since childhood! Wish you well and better luck with your next appts! Go armed with facts and a highlighter!
I use Kenalog for my mouth ulcers. It's in a tube (small) pasty/gritty consistency. You'll need a prescription, I believe.
I get tongue ulcers from time to time. I am managing my BD on the bare minimum meds that I can stay on that keep the full symptoms down and not take a ton of meds. Get you some magic mouth wash, remember you need to eat even though it is painful.
I can speak from my experience and from what I have been told at one of the COE. I have recurrent mouth ulcers and this includes my tongue. The consultant at the COE inspects my tongue and specifically comments on it as part of the examination when I go to clinic and so I'm sure tongue ulcers are part of Behcet's. I was found to have very low Iron levels and take supplements - I was told that this destabilises the oral mucosa and contributes to keeping the Behcet's active. It took me several years to have all my symptoms taken seriously and have my diagnosis of Behcet's confirmed. It's only now that I am managed by the COE that I feel confident about my care. That said, I have some of the rarer manifestations of Behcet's and I still struggle to get good control of these symptoms. I would consider seeing if you could get a referral to one of the Centre's of Excellence if you are in England or similar elsewhere - finding a specialist that has more expertise in diagnosing and managing Behcet's. This illness certainly is a journey - it sounds as though you have had a pretty rotten time already, I hope you get some relief soon. Good luck. Whatever happens, there are lots of people here willing to share experiences and, if nothing else, offer a sympathetic ear. X
i have had over 50 ulcers in my mouth, many on the tongue! ulcers are ulcers! I have had them on the gum, cheek, bottom of tongue. I did read somewhere that if you do end up getting tongue ulcers- that it is an indicator of a bigger problem (regular people get ulcers on cheeks too) because it is an extremely tough area to get an ulcer on.
Tongue ulcers are indeed a symptom!! who on earth told you that it is obvious they have no idea. To give you an example, I recently had a huge op which caused my whole body to go in to stress and caused a massive breakout of behcets symptoms. Included were ulcers all over my tongue I get them frequently but usually just on the sides however not the first time I have had them on my tongue! It's so infuriating when medical staff don't listen because it isn't it their book! I ended up severely ill because of doctors not listening on various occasions the last being only two weeks ago when I had a joint op but no one read my notes to see that I had this so they caused me to have massive complications! Anyway enough about me, personally I would get in touch with the BSS and ask them for written proof of this symptom don't google it to get info or you will be treated by an annoying know it all! Get it from the proper society i'm flabbergasted that no one seems to be listening. I hope you get some answers soon.
Hi, I was treated for inflammation of the eye for 5 years and when I had a severe outbreak of mouth ulcers, in my throat. I visited my GP who told me to gargle with Chloroseptic mouthwash. I was disappointed with his diagnosis as I had not eaten for 3 days and was extremely uncomfortable and asked to see another doctor. He looked at my records and saw my ongoing eye treatment and referred me for a Behcets test. This proved to be positive and I am now living a very normal life. So ulcers can be a sign of Behcets but not on their own I believe
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