Crohn's and connective tissue disorders

Hi, I was diagnosed with Crohn's in 2001 and am currently being treated for a Cerebral Spinal Fluid (CSF) Leak. It's been suggested that these, along with an aortic dissection, indicate that I have a connective tissue disorder. My specialist says that it's up to my GP to investigate, but the GP says that it's not possible to test me as I have Crohn's. Does anyone else have similar problems or can throw any light on this please? Thanks

3 Replies

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  • Hi,

    Your Gp needs to go back to uni! yes- some tests such as inflammatory markers may be raised if your having a flare of crohns giving false answers. However rheumatoid factor and Antinuclear antibodies (ANA) are not. These are specific tests. Although your GP may just think the inflammatory bloods are enough!

    I suggest phoning your specialist (or secretary) and explain your GP is refusing to do them. They could possibly post out blood forms to you to have done at GP, or contact your GP with the tests they want done.

    Good luck and let me know how you get on x

  • Thank you for help. I'll have another go with my GP as I'm seeing him again in 10 days. I'm waiting for another MRI scan so don't have follow-up specialist appointment yet, but I'm on first-named terms with his secretary. I'll update you - hopefully with something positive.

  • thanks, GP's need to know a little bit of everything so their experience and knowledge can be restricted in certain areas.

    Any other questions or worries please ask, we are a small growing forum but people share when and what they can, and we appreciate any advice you can offer x

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