Behcets centre of excellence

[Malbecmogs]

Hi everyone, I’ve got my first appointment (after waiting nearly 5 years) at the London Behcets Centre of Excellence in a couple of weeks time and wondered what I should expect at this appointment? I have no idea how long it’ll be, what/if any tests will be carried out etc so would be useful to hear your first time experiences please! Thank you

[Aerobobcat]

Hi Malbecmogs, I’m surprised that no one has so far responded to your post.

Look at my post “Behcets syndrome and the London centre of excellence”

This may give you some insight into what to expect from a visit which is likely to be a full day

My best wishes

Aerobobcat

[Malbecmogs in reply to Aerobobcat]

Thank you for your reply, that’s helpful - I didn’t realise I would be there for the whole day! My appointment is at 9:30 so might be a long day then. Hopefully it will be useful

[Aerobobcat in reply to Malbecmogs]

Yes, it could be a long day, it really depends on your symptoms as you will be seen by the specialists within the various disciplines and that plus blood tests etc does take time.

I do hope you get a positive response and effective treatment and look forward to an update.

Aerobobcat

[Debs-Effect in reply to Aerobobcat]

I only signed up yesterday after getting diagnosed in Tuesday and letting it sink in a day or two before researching it further. So I'm new to this group but I've had so much info from Facebook group that I felt really prepared for my appointment. It's still anxiety provoking though.

[Aerobobcat in reply to Debs-Effect]

Hi Debs-Effect, welcome to the club. Behcets is one of those conditions that will be recognised by some and derided by others, that’s been my lifelong experience.

However, since becoming a member of the Behcets Syndrome society in the 1980s I have gained a better understanding about the condition and trust you will also gain much knowledge and understanding.

So I wish you well and hope you find some relief from your symptoms.

Aerobobcat

[Debs-Effect in reply to Aerobobcat]

Thank you, I'm still in shock after 12 years of being gaslit and told it's all in my head (and believing it was even though there were physical symptoms)

Hopefully I will learn more to be able to educate those who aren't aware of it.

[Aerobobcat in reply to Debs-Effect]

Hi again, I should have mentioned having seen your other detailed response that you are very much aware of the difficulties in getting a diagnosis and the need for providing so much information, pictures etc, clearly you are more than aware of the hurdles you have to cross.

My regards

[Debs-Effect in reply to Aerobobcat]

Yes the hardest part was getting the GP to take me seriously (a previous one was the one who told me it was in my head) and it took me begging them to section me as I couldn't live with these pains in my head any longer and I could barely move or walk! I wanted them to get it out of my head. She said I can clearly see you are in pain and she mentioned fibromyalgia which she gave me painkillers for. They had to do other tests to rule things out. As soon as they started to do tests they realised I was actually ill and an urgent referral was made to the rheumatologist who has been amazing. He's arranged for me to see dermatology, opthalmology, neurology (I'm still awaiting that appointment) and gynaecology (still awaiting this but I'm not too far from assessment apparently) he also referred me to Liverpool CoE where I was diagnosed on the 2nd appointment there.

It's such a shame that gaslighting goes on, not to mention misogyny (my husband has said no one has ever spoken to him like they speak to me) but I've a history of mental illness (not surprising since I've been in pain so long and being told it's all made up!) And I think as soon as they see that it's a get out clause for them to say it's on your head so they don't have to treat you.

[Aerobobcat in reply to Debs-Effect]

I’m sorry to hear how tough a time you have had but at least you now have diagnosis and hopefully you will start to receive some effective treatment.

Your not alone many of us have a similar story to tell it’s just typical of having a rare largely unknown condition stay positive.

[Debs-Effect]

I had my 1st appointment at the Liverpool centre of excellence in October last year (thankfully didn't have a long a wait as you to be seen)

Take notes and pictures with you, as many as you can get! They need to see proof of what you are living with. I had 24 pages of notes of what I was dealing with and although they didn't read them all they had a good idea of what life is like and what I'm dealing with on a daily basis. The main thing with the mouth ulcers is that it's not the amount you have it has to look a certain way. Mine apparently have the 'right' look (the oral doctor agreed!) So get as many good quality pics of every ulcer, rash, sore, itch, swelling anything you think could it be that take it anyway and let them decide. (Some of my other issues aren't associated but I showed/asked anyway as I didn't know what was relevant or not)

Take plenty of food and drink and something to read with you too. We were there for hours (in assuming they will all work in a similar basis) You might see several different professionals depending who is there, with the last appointment usually seeing the main dr/professor at the end. Make sure you are hydrated as they take loads of blood (well they did with me)

Good luck with your journey. I was officially diagnosed on my 2nd visit, which was much quicker but still several hours long.