My first post

[Lifesadance]

I was recently at an appointment at Moorfields in London for inflammation in my eye that has not got better or gone away since October of last year; I also have lesions on my legs, arms and torso since August of last year, feel unwell, have stomach pain and have had mouth ulcers on a couple of occasions.My consultant mentioned Bechets 🤷 I was sent for bloods and am back at Moorfields on 3rd March.

I have been discharged by Rheumatology twice without them even seeing me and am now trying to get to Rheumatology via Dermatology but this is a 12-18 week wait for an appointment.

[Icefire]

Hi there, How frustrating for you. It feels like no one wants to diagnose Bechets. I waited for over 24 years for my diagnosis.

Whilst you wait you could look at diet and lifestyle if you haven't already.

This works for me...

I try to keep sugar and white carbs as low as possible. I eat loads of non starchy veg, nuts and pulses. I Avoid ultra processed food. See Dr Chris Van Tulleken and his work for more info. I eat cheese, eggs, fish, meat in moderation padded out with pulses. I'm fairly sure keeping blood sugar more stable helps reduce symptoms. See 'Glucose goddess' for help with that part.

Emulsifiers mess up my stomach and cause cramps and loose stools. They are in a lot of processed food.

I try to keep as active as possible but you need to build up gradually and rest if your body needs it.

Sleep and stress also play a role.

Maybe I'm lucky or my Bechets is mild but I've managed to avoid medication other than the odd course of steroids so far.

I did have Uveitis a few times and usually have erythema nodosum spots here and there. I was hospitalised as a teenager with lady ulcers and suffered terribly with mouth ulcers. My diet was horrible at the time. Full of sugar with little in the way of nutritious food.

I think a high strength Omega 3 supplement is helpful and if mouth ulcers are bothering me Methyfolate supplement seems to help.

Another consideration is hormones. They definitely play a part but I haven't figured out how yet.

Good luck, I hope you find a way back to better health.

[Budapest]

Have you thought of requesting a referral to the Centre of Excellence at Addenbrookes Hosp, Cambridge? They have a weekly Vasculitis Clinic & an excellent reputation.