Birmingham Behcet’s Clinic

[Sasha-pi]

Hi All,

Is there anyone on here attending the Birmingham Clinic?

I am on a waiting list and would love to hear how it works regarding consultations, regular access to your consultant and any other tips?

Have a great day

[Lubyluboo]

Hi Sasha-pi

Unfortunately I have not been to the Birmigham Clinic yet so cannot advise you but I am newly diagnosed with BD and was just wondering how you managed to get referred?

Thanks

Lucy

[Legomum in reply to Lubyluboo]

Patients with suspected or confirmed Behçet’s in England can be referred to a Behçet’s Centre of Excellence by their GP , dentist or other specialist eg rheumatologist : pass on this website :behcets.nhs.uk/health-profe...

[Lubyluboo in reply to Legomum]

Thank you. I will look in to this now as there seems to be quite a wait to get seen. Thanks

Lucy

[Lettie999]

Hello, I attend the Birmingham centre of excellence clinic, they are brilliant.Your first appointment will be a long one as you see a rheumatologist, opthamogist and and oral medicine specialist who all give you a thorough examination and go through your history. They then all have a quick meeting to decide if you do have Behcets and you get a formal diagnosis that day. Bring snacks, books and drinks.

The team at brum are really supportive and have always managed to squeeze me in when my symptoms have gone crazy, arranging same day X-rays, blood tests and ecgs. I cannot recommend them highly enough.

Good luck with all of this, it’s a horrible, stressful time trying to get diagnosed.

[Dexter01 in reply to Lettie999]

Exactly same for me got a diagnosis same day. Really friendly and helpful

[Flora_Fauna in reply to Lettie999]

Me too, I'm a member of the Birmingham Behçets centre of Excellence crew 😊 Thankyou Lettie, I couldn't have explained it better myself . Goodluck Sasha-pi 🍀 You will be in safe, empathic hands there 💙

[Sherlock11]

Hi, I attend the Aintree CoE. I too saw four different consultants and it took around four visits and about 11 months before I was diagnosed by Prof Moots who is excellent

I have always found if you have a problem the helpline is a life saver and enables you to be seen when needed. I usually have 4- 6 monthly consultations.

My GP referred me after I asked.

[harvey6465]

I went once only as travelling was a long way for me. Found them very dismissive of my problems and although confirmed diagnosis said better treatment locally which I have done for last 20 years. Very frustrating and feel very alone at times as hardly any med profession know about it still.

[Lettie999 in reply to harvey6465]

That’s not good service at all, maybe you could ask for a second opinion with one of the other centres of excellence over teams or zoom?.

[Sasha-pi in reply to harvey6465]

Hi Harvey6465,

So sorry to hear and completely understand your frustration and loneliness.

I have had 12 years of not getting anywhere at all with local GP’s. Now asked for referral and hopefully will one day get into Birmingham Clinic.

I will also be travelling far for this visit but wish and belief this will finally be diagnosed, medicated and controlled to an extend.

Please visit YouTube. There is a video ‘living with Bechets’. The one take away for me was, push and push your GP to medicate you and go back again and again.

I would also say, get another opinion and keep pushing!

[harvey6465 in reply to Sasha-pi]

I dont need another opinion I was diagnosed with BD in 2001 by a positive pathergy test. My problem is getting any help for the numerous problems I have and the pain is unbearable now. Local GPS are useless aren't they. I can't tolerate many meds so I'm stuck . I hope you have more success and don't suffer too much

[Sasha-pi in reply to harvey6465]

Yes completely with you. Been diagnose in 2003 in a different country. Left and moved to UK last 12 years and frustrating at GP’s lack of support.

Same here! Every test the GP’s does is negative, but why am I in pain all the time. The GP’s can’t understand how can your knee swell and pain without any injury.

Oh Harvey, so sorry and I feel exactly the same.

[harvey6465 in reply to Sasha-pi]

I guess at least we aren't alone with our problems although if you like me you feel like you are. Let's hope some pharma takes on the challenge to help us . Keep smiling 😃

[Flora_Fauna]

Hi Sasha-pi, 😊 I agree in regards to the majority of locum GP's Behçets awareness is sadly non existant! (once diagnosed, you will find yourself unfortunately educating Health professionals in many establishments about Behçets ) I was VERY fortunate that 1 nurse/GP at my local Dr surgery, had, had a patient presenting all the same symptoms as me,10 years prior to my appointment that day 8 years ago, She said that the patient had been diagnosed with Behçets disease (at the time I was like what on earth is that?) She told me to Google symptoms & see how they related ,she was convinced I had the same..Then that Wonderful Nurse/GP referred me to see a Rhumatoligist at Birmingham QE hospital, where there I was tested for everything ie Lupus,Herpes,HIV,ME, etc..All results came back as you can guess, Negative/Normal! (This happens allll the time, I'm either 'border line' or 'normal',? to be honest I have now come to terms with not expecting blood tests to come back with anything useful to explain any of my many inflammatory episodes or symptoms, the only thing recently they did detect was Vitamin D deficiency!)

I was then referred to The Birmingham Behçets Centre of Excellence where finally (after a year of tests etc within the local GPs & hospital) I was diagnosed by Symptom based diagnosis & inflammatory markers in bloods. Apparently I've had Behçets since I was 12 years old & was diagnosed when I was 40! That proves sadly the lack of Awareness surrounding this horrible disease.

Goodluck 🍀 at the Birmingham clinic, hopefully you will get all the answers you have been looking for, it's a long winding,bumpy road but you are Never Alone 😊 please remember that you know your own body more than Anyone, so it's really important that you keep pushing to be heard especially in regards to local GPs.