Referral to Liverpool CoE

[TigerLily42]

Hi everyone,

Just wanted say thanks to everyone that responded to my first post a few weeks back. It's been really helpful.

My doctor has referred me to the Liverpool CoE and I have an appointment on Tuesday next week.

Just wondered if anyone can let me know what to expect when I am there?

Thanks 😊

[Sherlock11]

Take all information and pictures of any ulcers ,rashes or anything else you have had .Take notes of dates when symptoms happened, how long they lasted and if anything triggered them. They will need to know all your history to piece things together. Your appointment will be early and expect to be there all morning. You will see as many different consultants as they feel you need. The opthalmologist may dilate your pupils, if so you cannot drive. They are quite happy for you to take someone and its helpful as they tell you an awful lot and you can't always remember.The doctors don't mind you taking notes. Sarah Hardy the nurse consultant is lovely and she will co-ordinate things. You may meet Jaqui Pooler the non medical support worker who will introduce herself and is great for any benefit information. There is nothing to be worried about as they are all caring ,lovely, professional people. Prof Moots and Dr Nair are so kind. Don't expect to be given a diagnosis that day although it could happen as they have to rule other things out. Take drinks as it's a long day and they will take lots of bloods. Good luck and I hope his helps.

[TigerLily42 in reply to Sherlock11]

Hello. Thanks for your reply! I have been to the appointment today! Haven't been given a diagnosis as of yet, as they have mentioned possible colitis and ibd. I had to go over to Liverpool dental hospital for a deep tissue biopsy on my mouth (luckily they managed to get me in same day so I didn't have to travel back - took 2 hours to get there this morning!) So I have had tests to rule out other things etc, along with pathergy tests, bloods, eyes etc. Everyone I have met today was lovely and really helpful and I felt really at ease. I know I don't have any definitive answers as of yet, but I feel more positive as it is still a step forward to ruling stuff out and confirming if it is or isn't Bechets! I have been told I will have a follow up appointment in around 3 months and that they will be in touch with a date. So possibly some answers then! 🤞

[Sherlock11 in reply to TigerLily42]

Good, I'm pleased everything went well, I was diagnosed after 11 months so it took a few visits. Even if you don't have Behcet's they try to find a diagnosis by referring you on. Good luck.