How do you know if your ulcers are related to BD?

[nicz]

OK, so i haven't been diagnosed with BD or anything, although I feel like i have an awful lot of the symptoms and that is why I am on here. I get incessant mouth ulcers all the time...they are always at least the size of my little finger nails and are incredibly painful. I often have several at the same time, and there seems to be no obvious reason for this. They go away usually within 2-3 weeks, after weeks of agony! I have spoken to the doctor about this and he said he could practically rule of BD because the ulcers last 3 weeks or more with BD. Is this correct? I also have had pain and tenderness all around my jaw, and am wondering if this is something a lot of people get with mouth ulcers?

Thanks

xxx

[andreafm]

Hi nicz

My jaw and cheeks [and sometimes my whole face] hurts. The ulcers do last a long time and can be varying in look and size.

Mine have lasted longer than 3 weeks before and at one time I had a cluster merging together which was permenant for months and months....they also tend to keep coming up in the same place. If yours are like this it may appear that you have had them longer when in fact it is the same one's going up and down all the time

Has your Doctor tried anything to help the ulcers or explained what he/she thinks it is if it isn't behcets?

If you are having difficulties with your Doctor diagnosing you...it is better to be seen by a Doctor who has experience with behcets [or be referred to the Centre of Excellance if in England] as they have been used to dealing and seeing these types of ulcers and also don't expect you to fit into the criteria word for word.

Hope this helps

Andrea

[behcetshurtsbeyondwords in reply to andreafm]

Oh wow Andrea, you have described my oral ulcers to a tee have that exact same problem-- I have certain spots where ulcers first appeared and once they healed, new ones would soon enough pop up again in the exact same spot. Sometimes the existing ulcer isn't even completely healed before another one comes out over it.. that's usually what causes them to be bigger and much deeper. Once and a while there will be a break where the area doesn't re-ulcerate, but there is visible scar tissue in those areas now and they tend to re-inflame constantly even without any ulcer. It's caused me to now have lots of hard bumps and lumps all over my gums. It's really rough going to the dentist for a teeth cleaning-- oh boy, lots of fun that is! Not This talk about mouth ulcers just reminded me that I go for a cleaning next week. I honestly wish I could just be knocked out for it!

[picklepops]

Hi Nic

Yes BD ulcers can last for 3 weeks and like Andrea siad up to 4!

I was sent to the Dental department of my local hospital and they were at a loss as to why I was having so many ulcers in the mouth. I was sent away with a steroid nasel spray and discharged. It was some years later still suffering from ulcers, I had soemthing else (my eyes) was seen in A & E, I was lucky enough to have a young doctor who when taking my general medical history tied it all together. So after some 35 years of suffering from various ailments was diagnosed with BD. I remember my prof at the centre of excellence saying that BD ulcers are different to ordinary ulcers.

So best of luck in getting referred

Sharon

[billi]

Hi Nic, I agree with both of the above replies and here are a few tips and some advice. Ask you GP for CLENIL steroid inhaler for you mouth ulcers. Put inhaler in mouth adn take 2 to 4 puffs depending upon severity and amount of ulcers. Do this at least 4 times a day initially, reducing as improvement shows. If you do this at the very onset you can often avoid a full flareup. Also although even water in the mouth can be very painful I and others have found CocaCola to be very soothing and keeps one hydrated. Now to the advice; do try to get a referral to Rheumatology (usually the first port of call for Behcets), Whilst waiting do write down the episodes of ulceration,time, duration, amount and feelings etc...like a diary and also try to take some photos and take these to your appointment. It can take a long time to get a diagnosis but it has improved on the 12 plus years it took for me. Hope this helps and do let us know how you get on.

Hugs and Smiles

Billi

[nicz]

Thanks for the reply guys!

The doctor said that some people just have to deal with mouth ulcers, there's no cure and no cause, and sent me on my way with some mouthwash that was useless. I had a blood test that came back completely normal, no iron deficiency detected or anything. And he prescribed iron tablets anyway because he said he didn't know what else it could be. I told him in the same visit about headaches, bad muscular pain, abdominal throbbing, constant headaches, constant watery eyes n even he gave me a printout that had a heading saying 'mouth ulcers could be a sign of crohn's disease or behcets disease etc', n when i suggested this he said absolutely not because the ulcers would definitely be longer than 3 weeks and mine usually last 2-3 weeks, but not normally longer (although Andreas comment was interesting, i never thought they could be the same ones reappearing!) and even went back today with a sore on my bottom which she said was 'a coldsore', but again sed im stressed n take painkillers! Of course i'm stressed! I feel really ill and noone can find anything wrong ;( Grrrrrrrrrr. Rant Over! xxx

[andreafm in reply to nicz]

Hi nicz

I don't blame you for ranting as it makes me feel like ranting for you.

Unfortunately a lot of us have been through something similar......if this is your G.P you may be better trying to find another or seeing another in the same surgery.

If you have a sore on your bottom you could go to your local GUM clinic and they will swab it and test it to see what it is....most GUM Clinics are walkin clinics and do not need a Doctors referral.

I know it isn't a particularly pleasant thing to do but it is the quickest way to get it analysed whilst you have actually got it...... Make sure you tell them about the other symptoms and that you suspect you may have Behcets. They will give you some treatment for it to try and can even suggest a referral by writing to your Doctor.

Some people on this forum have been diagnosed through these clinics and they at least will rule out any other nasties.

It is a case of taking things into your own hands and trying to be strong...I know it's hard but we will be here for you.

Take care and good luck if you decide to go to the GUM clinic

Andrea