Hello, I have not had a diagnosis but I am suffering from many of the symptoms of Behcet's.

However, because I am a nurse, my GP thinks I'm being paranoid and 'self diagnosing' and I am now worried about asking her to consider this as a diagnosis. I am in pain every day and I know there is something wrong with me, and I wish she would take me a bit more seriously.

Can I ask, how did others get their diagnosis?

[nicolakate]

Mine took a long time (about 6 or 7 years) to diagnose, and I think many others had similarly long waits. Having said that it doesn't have to be that way and others have been diagnosed relatively quickly. I think part of the difficulty is that many other illnesses often have to be ruled out first before you are left with the BD diagnosis.

I can sympathise with people not taking symptoms seriously. I went through a period where the doctors kept finding other, more minor things wrong with me and telling me those must be the problem. At one stage I was told my symptoms were down to scar tissue from previous operations and I would have to learn to live with them - I can just about believe this could cause abdominal pain, but pain and weakness in my legs, exhaustion, headaches, low grade fevers etc - I never quite bought that! I also went through a period where they tried to convince me that my symptoms were all in my mind and I actually used to believe I was just weak because I couldn't just wish them away.

I think the most important thing is to keep pushing and moving forwards, if your GP doesn't think it is BD that is fine as long as they have another suggestion they are following up on. I don't think it is acceptable to say that you don't have BD without offering an alternative.

I would ask to be referred to a rheumatologist with a BD specialism (I understand the Behcet's Syndrome Society has a list of recommended practitioners) or to one of the BD centres of excellence. This could help you with ruling this diagnosis in or out.

Personally my diagnosis of neuro-behcet's was made via my neurologist eventually after ruling out various other options (MS, lupus etc). I was then referred to my nearest BD clinic and a specialist rheumatologist to help confirm.

I think it is quite an individual process depending on the symptoms you suffer from, where you live etc. I would recommend from my own experience though not to allow yourself to be fobbed off or dismissed too easily by either your GP or any other doctor. You need someone to listen and take your symptoms seriously and try and find answers for you. If you are unhappy with your current GP and their attitude then try and see a different one if this is possible.

I wish you lots of luck and my thoughts are with you.

Nicola

[andreafm]

Nicola has given some excellant advice and just to add.....write a one page history with symptoms dates, treatment if any, dr you have seen. Keep it to one page if possible and as short sentances....you should be good at note taking

Also take photographs of anything that comes up...I have even taken pictures of my backside and other personal parts...it was this that helped me to get a diagnosis in the end.

Many years ago, I contacted the Behcets Society and found a rheumatologist who had experience in behects and wrote to him with my history etc and asked if he would see me....he agreed and I took the response to my G.P who couldn't refuse me really and so wrote the referral.

The email address for the Behcets Society is

[e-mail]

They can also give you the contact details of the Centres of Excellance

Good Luck

Andrea

[lesleyg]

Hi Lil

In desperation I had to do the same - take matters into my own hands and then get the GP to write the referral. I did eventually changed GPs because she was 'told off' by the specialist when I was diagnosed and then always held a bit of a grudge.

What is your worst symtom? Originally mine wasn't rheumatoid - more vasculitis and skin. By chance I made the appointment with an immunologist and they sent me to the dermatology department for diagnosis. Two years later I'm back at the same immunologists for treatment.

Lesley

[SuenMike]

Hello,

Nicola and Andrea have given you very good answers.

If it is of any consequence, when I first started experiencing symptoms of BD, I was also a nurse, not without a great deal of experience. I also was made to feel that my complaint was not being taken seriously even though I presented pretty much text-book symptoms. I poodled along for many years having bad ulcers in my mouth and 'down below' with all the general aches and pains and feelings of tiredness, so back I went to my GP. He insinuated that I was wasting his time so I decided I was acting like a hypochondriac and did not visit him until three years later when a vaginal ulcer grew and spread to the inside of my thighs and I was in agony, hardly able to walk because of the pain and also really bad arthralgia. Then lights flashed and I was hospitalised for five weeks undergoing all sorts of tests and eventually, 28 years after I first told my GP of my symptoms, I was diagnosed.

I hope by noting what Nicola and Andrea have said in their blogs will stop you from being pushed from pillar to post as I was. If I had been as sensible, I could have alleviated years of suffering.

All the best, I hope you will be taken seriously soon,

Suzanne

[Freebird]

Hi I am in the same boat. I'm a nurse too and I couldn't believe how all symptoms are spot on. I've seen the consultant who ruled out Behcets as I have no scars in my mouth. I took with me photos, symptom journal, comparison list, etc but he didn't even look at it! My job has gone down the pan and I'm left wondering what else it could possibly be! I even wondered if the fact I went armed with all that info put him off in some way. Back to square one with no adequate treatment. Hopefully you'll have a better result.