Behcet's Syndrome Society
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Do all Behcets sufferers mouth ulcers leave scars?

Hi I'm new and trying to get a diagnosis after suffering many painful symptoms for years. I attended the Liverpool Behcets clinic and was told its not Behcets as my mouth ulcers haven't left scars. Do all Behcets sufferers mouth ulcers leave scars? Is there anybody who doesn't have scars from mouth ulcers?

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Hello,

Sorry to hear you didn't get a diagnosis this time.

In answer to your question, some do, some don't. Sorry that's not very helpful but if you'd like us to try and help you (bearing in mind this will be based on experience and opinion, not medical knowledge) if you could tell us a bit more we may be able to.

e.g. how did you come to be referred there, what happened and do you have a follow up appointment or advice about what to do/where to go next?

No obligation to tell us anything but we do like to try and help if we can.

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Hello,

I also wish I could offer you a bit more than this-- but basically the answer is that sometimes the ulcers will leave marks or scar tissue, and other times, not.

I don't think that it necessarily rules out Bechet's if you have ulcers that don't leave marks-- after all, we are all different and Behcet's is a very different disease-- it can cause some pretty bizarre symptoms and like other autoimmune diseases, it can act very differently from one person to the next.

Ulcers can often be only one small aspect of the disease (although they are still a very big deal and cause a lot of distress and unnessary pain). I can kind of see why they would ask if your ulcers leave scars, because with Behcet's, it is very common for an already attacked area of tissue (keep in mind that every time you get a "Behcet's" mark on your skin, no matter how small it is, it is the vessels that have been inflammed and damaged) to continuously re-inflame and be re-attacked. This happens in a few different spots to me all the time.. like on the inside of my lip where I first got a bad outbreak of deep ulcers-- ever since then, the area has been hardened and redenned by scar tissue build-up and pretty much on a daily basis will became inflammed even if it doesn't always re-ulcerate. However, not all of my skin does this, and I have had ulcers, lesions, open sores, etc. on nearly every part of my body at one time or another. It may also depend on how many ulcers you've suffered from and for how long (especially in the same area of tissue). Anyways, I hope some of this helps. I am sorry that you are stuck without a diagnosis and having them dispute the possibility that you have Behcet's. Sadly, this is what happens a lot with this disease because it is not well-understood and unfortunately, many doctors are more likely to say "nope, its not Behcet's-- it can't be" then to actually officially diagnose it. And even after being diagnosed, sometimes doctors will take back what they say because of their lack of knowledge and expertise with Bechet's. Just keep hanging in there and keep on fighting for answers. Wishing you all the best :)

Jenna

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Thanks for your replies. I am still shocked that its been ruled out. So many of my symptoms are the same. I have suffered fluctuating leg pain since my teens and bad joint pain for approx 10 yrs both of which have worsened with each flare up and became more frequent too. I've suffered a PE and a number of DVT's since being in my twenties. I suffer regular mouth ulcers and large scarring spots on my face, neck, chest and back. I get very regular bad headaches and get shaky frequently. I get stinging blood vessel pain in my legs and they also itch like hell at night. I also suffer with IBS type symptoms. I get so tired that I have difficulty doing anything and when I do push myself symptoms flare up worse. My son also gets the leg pain like I did in my teens.

Unfortunately I was hoping for a diagnosis and to start some kind of treatment before I loose my job however this now means that I've run out of time. My work won't keep my original job open and the job I'm doing now was only to last until I started some type of treatment in the hope I'd get back to my original one. My poor husband already works all hours so can't do anymore. I'm so fed up.

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I wish I could say something to make it better, my lovely, but I can't. As this happened at the Liverpool Centre of Excellence I'm not sure what your next move should be. But there should be one, shouldn't there.

I don't have any scars from mouth ulcers - although the ulcers that appear elsewhere, like on my skin, do leave large scars. You need to get a second opinion from somewhere. Have you tried contacting the Behcet's Society to see if they can help? Surely, just because it is the Centre of Excellence doesn't mean they always get it right?

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Poor you!

I get ulcers on my chest and legs and head frequently. They dont always scar. Sometimes I think the ones that have scarred only do so because I am a bit of a 'picker'. If I have a scar I have to pick!!!! I am not as bad as I was because they are so painful and I do not clot well when I bleed but I have noticed when I do not 'pick' I dont usually have much scarring.

As you have read we are all different and I think BD should not have been dismissed because of this. I agree that you should seek advice or a second opinion.

Hope you get some answers soon.

Hugs

Angela

xx

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PS I meant I always have to pick a scab not a scar!!!

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me too - and that's where my scars are too, across my chest, in the hairs at the nape of my neck, actually in my hair on my scalp, and on my shins :-(

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Thanks, I have got so many problems to fight at the moment, medical and non medical, I don't know which to tackle first. I have just put in a letter of grievance in to my employer so I guess my employment fight is officially underway. I guess it's back to my the GP to talk through what I can do next. X

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Please, please see your GP. I also think the Behcet's Society might be able to help - they are marvellous and many of us have been eased on our way with them behcets.org.uk/menus/main.a...

Having fought the employer fight (mine was the NHS) I can tell you that you will fight better and with less stress if you have your mind clear about your medical issues.

We are always ready to help - just so long as you remember we aren't medically qualified (not officially anyway!) and can only give you the benefit of our experience with the dreaded Behcets. xxxxxxxxxxxxxxxx

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I will add that my mouth ulcers don't scar except a couple of tiny ones and I didn't realise this was a prerequisite for BD. I will also add that if they don't think it's BD they ought to suggest what they do think it is! I find it incredible when someone with your obvious problems is left to fight to get answers.

I wish you lots of luck.

Nicola

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Thanks. My fight is with the NHS too! I have been moved in to a temporary job which is ending and my application for a jobshare in the job I've been doing was ignored. I was told that they wouldn't consider me because I am physically unable to work in all areas and duties the job requires. I'm a nurse and have been pre assessing eye surgery patients. I have been vision testing and would be happy to train up in biometry too. I am just unable to fetch patient notes and work in the pre and post op area due to my mobility. The manager told me I am brilliant mentally and have been a godsend but am not physically able to work in the other areas. I felt so small! X

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Bum! I just wrote you a long reply and promptly went and lost it. I'll write it again in the morning. It was just some thoughts that popped into my head about your situation - try not to worry because you WILL get it all sorted in the end.

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