Behcet's Syndrome Society
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Feeling pretty downhearted now.

Hi everyone!

Just a quick question really (am looking for some reassurance)

I've just come back off holiday to find some mail. The Birmingham CoE have written to my doctor saying they aren't going to diagnose me just yet, and want to run more tests. They say they aren't sure... (feeling very low now)

I just feel like no one actually cares or wants to help. I don't know quite what else it could possibly be, as they have ruled almost everything else out.

Feeling very very low and wondering wether it's all worth the struggle really. Had enough of constant pain and waiting around. Any one else had any other similar experiences? How long did it take you to get diagnosed?

Thanks for everything,


13 Replies

Hi Siobhan

I am sorry that the appointment to the CoE didn't give you a full diagnosis yet but it is because the Doctors care about you that they are not just going to diagnose you without making sure it isn't something else similar.....because there isn't a clear cut test to prove you have behcets, the Doctors have to make it isn't something else.

If you look at this link from the Behcets Society it shows a whole list of other possibilities and you probably haven't been checked or tested for all of these

A lot of us here have taken many years to get diagnosed as we didn't have access to the Doctors or Centres then, that we have now...... When I became ill there wasn't even the internet to look things up or talk to other people who had the same problems as me.....I know how miserable it can get when you are just wanting a diagnosis, but you would be more fed up if they diagnosed you wrongly and gave you the wrong treatment.

What tests are you going to be having and when is your next appointment ?

Take care and try to think about it more positively ....I know this is easier said than done but it will help if you can manage it

take care


Hello I took over 18 years to get diagnosed of anything never mind the final stretch which involved 4 consultants from all over Scotland. Now with a diagnosis it is better but even now and again I meet a consultant from another area such as neuro who asks stupid questions such as how do you know you have behcets? Don't lose faith things can and will get better.


Keep your chin up!

Andrea's words are true. You need to get the right diagnosis for you to get the right treatment. These things take time but you need to be sure you have the right medications.

Hope you enjoyed your holiday!






Definately enjoyed the holiday! (Even if i spent a fair amount of it blind!!!:()

I know i sound impatient and immature.. its just the pain.. The sheer excrutiating pain that just wont go away. Feeling more positive this morning.!

Thanks for the reply,. Hope you are well (or as well as can possibly be!!!!) x


Hi there.

It is truly awful having to wait for the tests and a diagnosis.

I was diagnosed about 10 days ago by a Consultant Rheumatologist. At the consultation, he told me that if you have recurring oral and genital ulcers it can only be 5 things... he did list themselves but I cannot remember all of them - herpes and Crohns disease was amounst them. I have had all the possibilities ruled out over the years and with the numberous other symptoms, he had no doubt about my diagnosis. I started with the symptoms 32 years ago and it is comforting to know that there are people out there who understand the symptoms and what you go through. I have lost count the number of times that I have been to my GP and they have said there is nothing wrong (I am pretty annoyed by one GP in particular who kept trying to persuade me to take anti depression medication ).

Hang in there. will take a while, dig deep.



Yes, ive kept a diary with photos of every ulcer ive had in the last couple of weeks. The rheumy as CoE said he thought because of the severity of the mouth ulcer that i had photographed, it must have been from trauma! He was pretty shocked to find it wasnt.. :l

The genital ulcers are the bain of my existance!! Horribly painful and disgusting to look at!! Its just as well i dont have a partner... 0.0

The doctors have already ruled out crohns, coeliac, herpes, all STD and STI, cancers, gynae problems,... Im thoroughly checked out!!!:)

Hopefully ill be diagnosed by christmas.. thats my one wish!:)

*Digging deep* xx

Hope you are well,, god bless and i will pray for you xx

1 like

It seems like just one big annoying and gruelling merry go round. I do understand the frustrations but you do want the right diagnosis. Just wondering do you have diagnosed uveitis or elevated pressure in the eyes.

Look after yourself and good luck.



yes, elevated pressure. Although my first optical examination was fairly normal, i can not see out of my right eye, and can only see shadows in my left. I keep going entirely blind for spaces of time.. which is pretty concerning to say the least. Have had one doctor mention wether it might be pressure in my brain thats causing it. Just to finally have a name to this monster would be incredible. Honestly think it would be the best day of my life... :l x

Thanks for your reply, and i hope you are as well as can be xx


What a mixed bag life is for you right now! It must be very frustrating. It’s no wonder you feel down, coming back from a lovely holiday and then reading that letter. I assume you have split with your partner too – unless I misunderstood your post, I apologise but I don’t know what 0.0 means.

Andrea is spot on and I was pretty much in the same situation as her. It took over 40 years to get my diagnosis and like Jazzy, I still had some docs asking me stupid questions.

So much more is known and available now.

It isn’t that no-one cares, it looks as if they care a great deal and are being very thorough so that they can be as sure as possible that it is or isn’t BD. If it isn’t, they will probably advise you about the next stage of your journey towards diagnosis.

Hang on in there – it’s better to wait a bit longer for the right diagnosis and get the right treatment than to be diagnosed with something you don’t have.


Hi tiger feet!

Yes, my partner decided I wasn't worth his time if I'm blind... Which is rather sad.. But I'm better off in the long run! Had far more fun on holiday being able to go out with other people for drinks!!:)

I know I sound silly!! Its just hard to stay positive (as I'm sure you all know!!) nothing a bit of disarrono and ice won't cure!:) x

Thank you for your lovely reply xxx

God bless xxx


I don't know you or your ex-partner and am not being judgemental, but taking your own words, it does seem better to have found out now rather than later.

Of course it's hard to stay positive - pain and positivity are not natural bedfellows!

Enjoy the Disaronno :) x


Hello me lovely

I agree with what the others have said here, like Tiger it took 40 years till someone finally put all the medical symptoms together! I went through years and years of pain and all the various symptoms. Was given antidepressants for 5 years, I think this was because they thought I was mentally ill :( Thank goodness when I changed G.P.'s things started to change.

So hang in there :) xx



I to went Birmingham CE and was told I probably have Behcets, but was not given a exact diagnosis, so I know how frustrating it feels, but I have to say get in touch with the support worker, she is fantastic, and the rest of the team. They may not be able to give you an exact diagnosis but they do their level best to help with the symptoms that make life unbearable at times. I can honestly say I have put up with this for ten years, but the team at birmingham especially the support worker and head nurse have gone out of their way to help and support me, even calling my GP .

You don't and shouldn't have to put up with this. Good luck and I hope it works out well for you.


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