EULAR Releases Recommendations for Managing Be... - Behçet's UK

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EULAR Releases Recommendations for Managing Behcet Syndrome

magician profile image
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rheumatologyadvisor.com/dia...

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magician
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6 Replies
Jaxxi profile image
Jaxxi

Very interesting. Thank you for posting. It’s good that it outlines a protocol for gastrointestinal involvement. My gastrointestinal issues are very debilitating at times but the CoE has offered no help or investigation. They latched enthusiastically onto a diagnosis of IBS I had 40 years ago, though. Pfffft. Literally.

TheHud profile image
TheHud in reply to Jaxxi

Which centre are you at Jaxxi? My irritable/spastic colon/IBS diagnosis was 1983. Do they ask for further evidence of documented severe episodes? I do have a few but getting access to my old records is proving difficult. To be honest in innerds and bits and bobs are in such a state I don't want any investigation of any sort. I still have nightmares about what I went through in 1983 it was horrendous at both ends.

Many thanks

Jaxxi profile image
Jaxxi in reply to TheHud

No requests for anything really. I just tell them about my GI troubles and they go hmmm.

TheHud profile image
TheHud in reply to Jaxxi

Which centre are you at please. :)

Jaxxi profile image
Jaxxi in reply to TheHud

Messaged you. I sense it is a lack of protocol at the root of it rather than any failing in my care team.

in reply to Jaxxi

Which COE? Is this said by...Rheumy or ? Please message me if you prefer. Thank you. PS I noticed someone else also asked. :)

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