First Behcets Center of Excellence apt questions

[Milliebell1]

Hello

I have my first appointment at the Behcets center of Excellence coming up very soon.

I have a history of symptoms that align with neuro-behcets and my hospital consultant gave me the diagnosis of 'possible behcets'. I also have a diagnosis of Crohns (but I think issue actually Behcets related).

I had over 4 years of biological therapy which has enormously helped and I am now in remission from Crohns.

The Bechets center of Excellence appointment finally came round after over 6 months waiting and before my remission.

I am currently in the best health I have been in 5 years and am therefor worried that the Center of Excellence will not understand why I am attending. I haven't had a Behcets flare in over 6 months.

How do I best approach this appointment? Just with lots of information on my history?

Thank you in advance

[ZoeSwifty]

HiDon't worry about being in remission, they are used to that. I go to London and see the very kind and lovely Professor Fortune. When i first went i had hardly any symptoms as i had been given a load of steroids previously by one of my consultants. You need to take a full history and photos of anything, ulcers anywhere you have them they want to see them! And i mean anywhere! Any other spots etc.

They will go through everything and take copious blood samples! You will see specialists as well. If its london you will see Dr Kidd i expect as he specialises in the neuro side and is also very nice.

I also have stomach related behcets, my gastroenterologist has ruled out crohns as he can't find anything that shows Crohns but at the end of the day as he said its the same treatment - a biologic in my case i'm on now which has been a game changer and kept me out of hospital. So far!

Good luck and take plenty of reading/laptop and food/drink as you will be there for a long time, especially your first visit i would expect most the day! I am going up at the beginning of Feb for a follow up and will expect 5 hours? i've fallen asleep waiting as there are big gaps between seeing people? If you expect it you wont get stressed about it? However the treatment and Professor Fortunes knowledge is totally worth it!

All the best Zoe

[Milliebell1 in reply to ZoeSwifty]

Thank you Zoe. I might need to reschedule as have developed a chest infection. These tips are so helpful though and I feel more prepared for when my appointment comes - and it's a relief to know not to worry about not having current obvious symptoms so show them on the day! Thank you again

[Expectthebest]

So glad you are doing well now. Write a history including your flare symptoms dates & treatments given.I was a crohns vs behcets patient initially. But inflammation in my eyes to great degree Dr's finally settled on behcets.

Wishing you continued success

[Sherlock11 in reply to Expectthebest]

I attend Aintree CoE, and like the others have said expect to be there for a long time seeing everyone necessary. Take photographs if you have them and tell everything even if you think it's nothing as it helps to build a picture, and makes diagnosis quicker. I was previously diagnosed with Crohn's and treated as such, but this was never the case and was totally ruled out (I believe I have had Behcet's for about 38 years but had never heard of it even though I was a trained nurse.) Good luck and I am sure you will be sorted out.

[Milliebell1 in reply to Sherlock11]

Thank you both for your kind replied. Its so interesting that you both also had the Crohns diagnosis initially too! Hope you are doing well

[Milliebell1]

Thank you so much all for your advice. Thankfully I have lots of photos and a written history so I will take that. I may have to reschedule my appointment as I now have a chest infection and painful inflamed lung (third time in 4 months) and don't know if I should go or not but I emailed them to let them know and whether to reschedule.

[Aerobobcat]

Hi Milliebell1, I was interested in your post and the responses you received and this prompted me to post my own experiences of my Behcets review at the London centre of excellence which may be of interest.

[Aerobobcat]

Hi Milliebell1, I don’t know if you were able to view my post regarding the London centre of excellence. But I am interested to know how you got on when you visited them. We’re you happy with your appointment or did they say your Behcets was burnt out?