Could Behcet's be my problem?

Hi,

I have had recurring mouth ulcers for a few years now. I get them most weeks, a few at a time. I have tried cutting out all sorts of different food groups, I have been tested for coeliacs and chron's all of which came back negative. My doctor has just said that "It's one of those things". I'm really unhappy with this as I'm sure there must be a reason.

So I'm just sort of googling around to see what might be causing them, and I stumbled upon this forum and wondered if this might be it.

I've had a lot of fatigue for a long time, but I put this down to hypothyroidism and I also suffer with SAD (which I use a lightbox for). I have dry eyes (but nothing worse than that) and lots of abdominal problems (IBS, reflux- for which I take a daily dose of 40mg omeprazole).

So, I'm not really clear about whether this could be Behcet's, or something else. I don't think I'm unwell enough, or have enough of the symptoms for this to be right.

Does anyone have any advice? I'd like to get some sort of idea before going back to my GP for hundredth time (I feel like such a hypochondriac).

Thanks in advance.

13 Replies

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  • Hi believe me when I say we here at Behcets society know how you feel. It takes on average 12 years for a firm diagnosis, although things are getting better time wise. The problem is that many of these auto immune diseases have very similar symptoms and it is really important to get the right diagnosis to then receive the correct treatment and meds. I have suffered with BD for 32 years now and at the onset nobody had no idea what was wrong with me. Then after about 7 years I was recommend to see a rheumatologist. This was the first time I heard the name Behcets mentioned , it still took another 4/5 years for a diagnosis. Since then the main doctorsfor all of us are rheumatologists.......maybe you should try to get are referral to one. I'm no expert but to get a Behcets diagnosis you need to have at least 4 out of 5 certain symptoms as there is no positive test as yet. Hope this helps, take care and you are not going mad!!

    Billi

  • I think Genital Ulcers is a pretty strong indicator. Try to see if dry salty chips causes ulcers, its often the abrasion which is the culprit rather than specific food types.

    Best to see a specialist though.

  • I only have mouth ulcers, not genital ulcers. Thanks for the information.

  • I never had genital ulcers, its not always textbook. My most troublesome symptoms are retinal inflammation (never get uveitis at the front of my eyes) the positive pathergy, head pain and mouth ulcers. And the dreaded fatigue!!

    I wasnt diagnosed with behcets until my retinas went beserk, until then i was treated for stress :-S

    Hope you get answers, but try not Google! Dont worry about going back to gp. :)

  • Hi there, try calling our helpline for a chat 0345 130 7329 It is manned by people who have BD themselves. We could also send you leaflets etc to show to your GP. Best wishes and good luck with your diagnosis whatever it may be.

  • Thank you. I'll give them a call.

  • I may be wrong about this ....not an expert....but I think you also get mouth ulcers with Lupus but not genital ulcers. Perhaps a call to Vasculitis UK is in order. They may be able to tell you that. And they will give good support and advice on how to get a referral to a good doctor who will understand your symptoms better as will the Behcet"s helpline.

  • Thank you. That's really helpful to have some other avenues to explore.

  • Hi, just thought I'd share my story with you. I am currently still having investigations to get to a definite diagnosis but my recommendation for you is to push for a referral from your gp.

    I have suffered with mouth ulcers and 'IBS' symptoms since 16 (now 35) and have been fobbed off by doctors for a long time as they have treated each condition separately without linking them or taking me seriously. I also suffer with fatigue and the odd genital ulcer so fairly mild symptoms compared to a lot of people on here. I was initially referred to a gastroenterologist who found I had an ulcerated mass in my bowel, this was removed and I was diagnosed with Crohn's. After then discussing my other symptoms I was referred to a rheumatologist to investigate for behcets, I've been put onto colchicine which is helping with the ulcers but still waiting for them to decide for sure what I have.

    Good luck!

  • Thank you Pip. That's really helpful. Can I ask what changed, to make people start investigating your symptoms holistically. I feel as though I'm in and out of the doctor's all of the time, but nothing ever seems to move forward.

  • Yeah I know that feeling, I stopped going for a while as I knew I would just get fobbed off and get upset. My husband is military so we move every few years so I had to keep changing gp's which didn't help. My IBS symptoms were just getting worse and worse to the point I was getting a bit depressed and suffering anxiety related to not finding a toilet in time. I eventually went to the gp with my husband and said I'd had enough and could not continue the way I was. When I went to the gastroenterologist she initially thought it sounded like IBS too but after sending me for an MRI they found the mass. I then had to have 2 colonoscopies but both biopsy results were inconclusive and as the mass was causing a partial obstruction they removed part of my bowel. What they found did come as a bit of a shock to me but good now that they are finally taking me seriously and getting proper treatment.

  • Thank you for sharing that Pip, and I'm sorry to hear what you've been going through. I hope you get a diagnoses (with whatever outcome) soon. I also had a colonoscopy and had a polyp removed but they said no Crohn's and just diagnosed me with IBS.

  • Did they do any other tests? A colonoscopy only shows them your large bowel and the last little bit of the small bowel so they wouldn't be able to rule out Crohn's completely without other tests. Anyway I wish you luck and hope you get some help with dealing with your symptoms.

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