A useful paper on Epilepsy and Hughes Syndrome/APS

[MaryF]

ncbi.nlm.nih.gov/pubmed/272...

MaryF

[KellyInTexas Administrator]

I am very lucky to have a local neurologist who has a good grasp of my seizures ( temporal lobe) and aps.

He printed off very similar articles for me when my APS was diagnosed.

A ha! He said. Now we know why you are having the seizures. ( prior to APS diagnosis he assumed it was cortical dysphasia, but we could never identify it on MRI.)

Anti convulsants were never fully effective. I had to have two different ones at once.

( I still do to be certain just because INR is so labile. I will have break through seizures quickly if I dip too low. In the upper two’s and I’m in trouble.)

It wasn’t until warfarin that that ,” break through seizures” abated.

Very important to put this on the radar. Thank you.

[MaryF Administrator in reply to KellyInTexas]

Thank you for the feedback! Keep well. MaryF

[KayHimm]

Very interesting but complicated. Thanks for sending. That explains, I think, how my own neurologist, who is an epilepsy specialist, became focused on APS and autoimmune diseases. In the U.S. there is now fellowship training in autoimmune neurology. This should help with APS, lupus and other autoimmune disease treatment. Many patients feel disappointed in the care they get from neurology. Hoping that is changing now that there is a sub-speciality devoted to us.