Do I say I don't agree with his possible diagnosis ?

[SignalBoxer]

Even though I've been diagnosed with Behcets at Aintree by prof moots a while ago , the mouth doc at Aintree seems to think some of my more severe ulcers don't look like Behcets ulcers but maybe erythema multiform major ... I disagree but how can you argue with the proffesionals ?

[billi]

You have to find the courage to stand your ground. It seems dIagnosis, treatment, meds etc are different depending on who you see. I don't know how long you have been diagnosed ( or have you)...did they suggest Behcets or was it a definitive diagnosis with at least 3 of the other symptoms. You really need to talk with the prof again, not only to put your mind at ease but also to get the best treatment etc.

I know it is difficult believe me, I have suffered with Behcets for 26 years and it took 12 years to get a diagnosis ( which to this day is sometimes questioned) this because I seemed to have fared better than others.

Be strong and get some answers and then you can concentrate on getting yourself as we'll as possible on the correct meds.

Hugs

Billi

[SignalBoxer in reply to billi]

Thanks Billi , been diagnosed by the prof a year ago ... But first time I've met the mouth doc so not that keen on him ... Get all the usual symptoms .. Genital , oral ulcers .. Severe joint pain in elbows , wrists and hands / fingers and general fatigue ... Prof & Behcets nurse always seen my ulcers so the first time this guy does and says that they might be something else ... Well I felt in my comfort zone before by finally getting this horrible thing diagnosed but now I feel at a bit of a loss ! Thanks anyway for your advice

[Hidden]

In my non-professional medical opinion, my understanding is that erythema multiforme major can be a symptom/manifestation of BD, although there are other causes.

My instinct would be to ask both of them together - an email or letter perhaps - for their opinion and explanation. If the mouth doc thinks the ulcers don't look like BD ulcers, then presumably he has an opinion about what they actually are and what to do about it, which could impact on your overall treatment and management.

I don't think you need to argue at this stage, but to query and clarify and take it from there .As Prof Moots and the mouth doc are both at Aintree, they will both have access to your records and can consult with each other.

[andreafm]

I am sorry to say that I frequently get conflicting views on what symptoms are, particularly from new doctors...it really doesn't help.

I agree with Tigerfeet

I now insist to any consultant or doctor who disagrees with a previous diagnosis, that they write to the Doctor who diagnosed me, with their thoughts and to copy me in on their reports.

Personally I would probably hold more standing on Prof Moots than I would a mouth Doctor...this is no disrespect to the mouth doctor, but prof Moots is more of an expert in Behcets....but let them argue with eachother as it is their diagnosis. This should be quite easy as they are in the same hospital.

The other main point is that the treatment of these 2 conditions may well be the same anyway and if it is...it really doesn't matter in the end what they call it.

I hope this doesn't sound harsh but this is how I have had to deal with my condition over many years with one doctor pitting me against another and this is what is happening to you and it isn't fair on you.

I just recently have got my doctors to all talk to eachother because it was getting out of hand. Once they did things fell into place and I have now got the right treatment that they all agree to and when I see them now it is totally different....no conflicting views.

Hope this helps

Andrea

[xandii]

hi Hun,

Surely it is likely that you could get several different types of ulcers and not always the same ones ? Maybe that particular batch were slightly different from the ones Prof saw ?

It doesn't mean that you don't have BD, but maybe somethng else as well ? This would be pretty common place and If Prof has given you a diagnosis then I would certainly believe him....after all, he does head the Centre of Excellence at Aintree.

To be honest Hun, I am also under Prof Moots and would put his diagnosis above anyone elses as I have complete and utter faith in the guy and have had for the last 10 years plus. just my oppinion Hun but I hope it gives you some little bit of reassurance. Talk to Prof about it....I'm sure he will reassure you !

Take care, Big hugs xx

[amietamant]

Search Google for more in-depth descriptions and photos of different types of ulcers (and Behcet's can cause lots of different skin lesions) so you can compare what they look like. Also browse through Google Images of these terms (search both for common terms and medical words like cutaneous).

Most importantly, take photos of each of your visible symptoms, paper print them out, and bring them with you to appointments. Doctors LOVE pictures of weird things.

[Katniss12]

I agree that doctors like to disagree... but BD is not all about the look of one particular situation. It is the history and culmination of the signs & symptoms. My last doctor who finally issued the official diagnosis did the HLA B51, so that if it were positive with all the history and biopsy I had and another positive autoimmune marker I have, would leave no room for doctors to say much more... it was positive so it was closure for me, especially because doctors I had seen only looked at my Caucasian heritage and said I was not the right kind of person for it.