Don't have recurring ulcers - is it Behcets?

For about 4 years now I have been told by various doctors I have Behcets, but when seen by Rheumatologist, he says due to not having recurrent ulcers, then it can't be Behcets. Have undergone numerous tests for other conditions, but all have come back negative. Rheumatoligist reluctant to diagnose behcets unless I get ulcers again. So it's a case of we know what you don't have, but not what you do! Has anyone else had a diagnosis of Behcets without having recurrent mouth ulcers?

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  • The Behcets Society website has a fact sheet called overview which you might like to check out the ulcer condition is central to the indicators as you will see. If you need anything further send and email to info@behcetsdisease.org.uk

  • Hi Trish

    My sister has been diagnosed with Neurological BD but has not presented with re-occurring ulcers in any part of the body, I'm sceptical of the diagnosis and we are very new to this as she is only recently diagnosed from last December, but already had an acute flare in the last month with symptoms very similar to that of a stroke victim, so now looking for a second opinion else where but not sure where to go without a direct referral from Addenbrookes, who are adamant that BD working diagnosis fits.

    The diagnosis changed a few times with the initial onset of the condition but they have settled with BD, after numerous tests for other conditions. Information all through the short journey has been vague and all been a bit of a fight to establish as any credible information to convince of BD, Any suggestions and second opinion referrals please?

  • Hi there both of you Triciastewart and sissy123

    I do get recurring mouth ulcers [and genital/posteria] but this is not the dominant part of my condition. Have had behcets for over 20 years, which became badly neurological around 6-8 years ago.

    The original diagnosis was given in the year 2000, but I wasn't getting terrible ulcers around that time and the diagnosis was based on a past history of ulcers, herpes, lumps under the skin, eye inflammation and arthralgia [fibromyalgia].

    The dominant side of my condition is one of extreme variable weakness, balance, vision, memory, ptosis, speech and swallowing with spasms. This started one sided and was like a stroke. In fact the eye department sent me for an urgent MRI, thinking I'd had a stroke.

    Every person with this condition is different and my symptoms have changed over the years.

    Your sister's consultant is the one to ask what basis they have given the diagnosis as one would assume ulcers would feature in that diagnosis. It does seem strange to have a diagnosis of behcets without ulcers/skin lesions featuring somewhere as this is the main part of the criteria for diagnosis. But perhaps there are other people on this forum that can help with this.

    The behcets society have got a list of Consultants who work with behcets and that is how I found my original neurologist consultant at the Royal Free Hospital in London. Not sure if we can give names out here, but if you email the society they will know who I mean. Other than that there are the new centres of excellence, but not sure if they are up and running fully. The Society will also help you with that.

    I am with different consultants now, a rheumatologist in St Thomas's and Neurologist at my local hospital, which works for me.

    Good luck

  • Thanks sissy123 and adreafm for your reply. Though I haven't had recurrent ulcers I have had recurrent skin lesions, extremely swollen knee and leg where I can't walk, joint pain, swelling of fingers and toes, the last time I took ill I also had Posterior uveitis. They thought I also had DVT at the start of it all. It seems to me also that when I get the cold, instead of clearing up in a week or two I end up really ill for about 12 weeks with these symptoms and also extreme headaches and I get really tired. Last time I had sinuitis, tonsilitis, and just about anything ending in itis lol.....you need to laugh. My words tend to get mixed up as well, I mean to say one word, but it's a completely different one that comes out.....drives my husband nuts! Tends to be worse when I'm tired.

    Thanks again

  • Hi Tricastewert

    This sounds pretty much like me. Yes I can definately indentify with the very frustrating word finding problem. I actualy know what word I want to say but a completely different and unrelated word comes out. My husband now seems to have a way of knowing what word it is I wanted, which is helpful at times. It becomes like a game of charades having a converstaion or relaying a message. This also happens if trying to read aloud, even though I can read the words, different words come out of my mouth.

    very strange :(

  • I get terrible recurrent ulcers, they drive me insane! Prior to learning about BD I was always told the ulcers were due to me being "run down". It makes me so angry when I hear that saying these days. Because I was in bed with illness a lot it reinforced the view I was "run down" and I guess even I believed it at times! I think there is a criteria for BD where you must exhibit a certain number of major indicators and a certain number of minor for the condition to be considered as BD. I am not an expert on this but am sure I saw it last time I visited with my consultant. I am sure an Admin on here will put me straight, perhaps it is in the info sheet offered via e-mail?

    My BD is something of a jigsaw puzzle that I am piecing together without the box, 25 years after someone else started it. I only learned of my BD 2 years ago but as I go back over time I realise the pieces fit and all that happened to me health wise which was so weird at that time now makes perfect sense.

    Does anyone else feel like this?

    DD

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