RLH Behçet Clinic

[Calo]

Hi everyone!

Hope you are all doing ok.

I just had my first appointment at the Royal London Hospital Behçet’s Clinic with Professor Jiwad. After a huge conversation with one of the Clinic’s Oral doctors where I shared previous exams, my medical history, medications and photos of previous behçet complications, I was given oral meds for ulcers and they said that my clinical symptoms were inconclusive for Behçet and that it could or could not be it. I am so confused as I have been diagnosed and treated in Portugal (where I am from) by 2 different rheumatologists and they both prescribed medications taken for Behçet.

Prof Jiwad requested a lot of blood tests, which I have done and will now wait for more feedback. He mentioned a gene that I can or not have, and that since I am Mediterranean that would be a strong indicative. He also tested me for other conditions such as herpes and celiac disease. He mentioned my skins issues are urticaria related and that it has no relation to Behcet as I was previously told.

I loved the centre. Was seen seen by different specialists and everyone was so kind and made me feel seen and heard for the first time. Professor Jiwad was amazing as I can really feel he is doing the best to help me and find out what’s wrong.

I was just wondering if anyone else here has been through a similar experience? I am just nervous because my inflammation markers are very high (have always been) and it it’s not Behçet I don’t know what it could be and it means going back to zero again.

If you have been or know someone who has been through something similar, I would be so grateful if you could share. I am really struggling!!

thank you very much!!!

[Zuzu798]

Good Morning, thank you for sharing your experience with all of us in this community. I think it will make us all more positive in making an appointment. I have seen some of Prof Jiwad's talks and he is very experienced on the different type of conditions that show up in Bechet, I think if you give him a bit of time he will come back to you after all your tests results are in too. I wish you well in your journey as I wish all of our fellow Bechet friends. There are some difficult times but I believe in a positive attitude always. 😊

[B4Behcets]

You might want to read this thread

healthunlocked.com/behcetsu...