CofE London referral made: Hello, I posted a few... - Behçet's UK

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CofE London referral made

EmmieJayne profile image
3 Replies

Hello,

I posted a few weeks ago having suffered with the terrible Meningitis type headache that can be experienced with this condition.

I had Viral Meningitis in 2014 and the headache is exactly the same.

I’ve been getting these headaches for around a year after a terrible flare up last year and have blocked them out with Sumatriptan that has worked until recently.

I keep records, the dates and duration which is increasing from 1 week up to 2 weeks at a time, and I get them monthly!

I can treat the mouth ulcers and any flare up of my Intermediate Uveitis. But I can not cope with these headaches!

My Rheumatologist has made a referral to the CofE in London for me to see a specialist there.

Does anyone know how long it’ll take for the appointment to come through? And any advice that could help prepare me?

Thanks

Em

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EmmieJayne
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3 Replies
SCMW profile image
SCMW

Hi, this was one aspect I didn’t get to speak to them about but hope to on my second visit. Do keep in touch re progress as the headaches are one of my hardest elements to keep under control too, best wishes

sam0511 profile image
sam0511

Hi - I too had migraines every month - see my posts - was prescribed Azathioprine two years ago and I haven't had a migraine since. My eye involvement is now quiet - my consultants words which I like! I was admitted with suspected meningitis - reading your post I can see why now. I have never felt so ill. Good luck at the C of E - make a list of questions so you don't forget anything. Please post how you get on and I hope you get some relief soon x

EmmieJayne profile image
EmmieJayne

OK, sounds like quite a while waiting time. I will contact them the confirm the referral.

Good luck for your appointment 😊

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