Behcets possible without ulcers?
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Hi there. I have had a gp recently suggest a symptom I am having is "behcets syndrome or something similar". After reading about behcets, it sure seems like it would explain a lot of unexplained health issues I've had over the last ten years.
The only thing I definitely don't deal with are mouth ulcers, which is supposed to be the top symptom. I also read that behcets differs greatly from region to region and person to person, and really all symptoms are not known. The thing that gets me in the simplest words is the inflammation, that's definitely me.
Are there conditions similar to behcets?
0 likes, 3 replies
margaret22116 Louv
Posted
hi, I have Behcet's and my understanding is that you do not need to have ulceration but, as you say, it's one of the key symptoms. I don't personally get much ulceration though I know others who get a lot. But yes, there are other similar diseases and really it needs a specialist to work out if that is what you have.
Behcet's belongs to a group of diseases which all come under the heading vasculitis. Vasculitis is an umbrella term for a group of inflammatory illnesses and includes things like Sjogren's, Lupus and Wegener's. So the problem often is they have overlapping symptoms.
I am most impressed your GP is being so knowledgeable because so many of us suffer without any answer for a long time and have to 'fight' for a diagnosis. Well done your GP on being so much more enlightened.
I am not sure if you live in the uk but if so I would recommend you get referred on as quickly as possible. If you have numerous health issues going on and your doc thinks that is possible grab this opportunity to get a referral and hopefully a full diagnosis. Your life can be so much better with the appropriate treatment.
Tumtum1963 Louv
Posted
Sjögren's and Behcets can be interchangeable, so someone on the Sjögren's forum with Behcets often explains. Sjögren's is more common than Behcets - affecting about 1 in every 1000 of the population as a stand alone disease. It can affect any part of the body - but most sufferers, perhaps all - will have dry eyes and mouth.
Although it's a relatively common form of autoimmunity it is very underdiagnosed - mainly because many other conditions and medications/ treatments and the ageing process can dry up the eyes and mouth. For me it presented like, and was misdiagnosed as RA. Then Behcets was considered and APS as well. The Schirmers eye test and spit test showed normal so Sjögren's was discounted, as was Behcets.
Finally I moved to a third rheumatologist in a new hospital and my bloodwork had changed, once off steroids and DMARDs for RA - and this made the rheumatologist wonder about Sjögren's. I had a lip biopsy and a parotid ultrasound on same day. The ultrasound stated no evidence of Sjögren's but the lip biopsy was 100% positive and this is diagnostically definitive. My presentation is mainly neurological. Hope this helps.
margaret22116 Tumtum1963
Posted
I couldn't agree more with this. I was tested initially for Sjogren's and have questioned it many times myself symptoms are so similar. Like you I have mainly neuro symptoms but with normal Schirmer's and presenting with some (though infrequent) ulceration I was diagnosed with Behcet's.