Update

It's been a while since I posted on these forums.

I have been to see my specialist several times since my last post, he says that my bilateral Papeladema has all but gone just leaving scaring.

However, my eye sight and pain still deteriorate. He says this is due to the optic nerve being re - exposed to my csf.

I continue to be a nervous wreck of pain and inability to work, which I am hating, even more than the frustration of the no answers.

All he can say is idiopathic no known cause or source. Kinda sad.

Wish there was better pain management than the two very invasive procedures.

hope this helps someone, if you have questions I'm happy to answer

1 Reply

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  • Has your consultant ever tested you for Hughes Syndrome/APS, it is a diagnosis frequently missed, I enclosed a paper and also the blood tests to do, which need to be done in a hospital setting, due to them not hanging around as they are a bit time sensitive. If you do get a positive result, please come back to me as I look after the forum for the charity associated with this condition. ncbi.nlm.nih.gov/pubmed/179...

    Tests for Hughes Syndrome/APS

    hughes-syndrome.org/about-h...

    No harm in at least ruling this out, the tests are cheap for a GP to do.

    MaryF

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