Negative Anca, normal antibeta 2 glycoprotein and started with seizures

[annie330]

Hi folks not sure what I'm looking for to be honest but wanted to put a post on here. Have been told over the years I have vasculitis, lupus and APS, I'm also insulin dependant diabetic. Over the years even going back to 2000 my anca tests have been positive (only found this out after diabetes consultant went through my records whilst I was with him and he had referred me to a rheumatologist back in 2000, which never happened and I wasn't aware of this, anyway I started seeing a Rheumy in 2008 after hospitalised TIA and the vasculitis, lupus and APS diagnoses followed).

I started with seizures at the end of October all whilst asleep and have had 6 so far. At my last rheumy appointment in December I saw my latest bloods which showed that my anca was negative and my antibeta2 in normal range, when my bloods where done in July they were positive anca and out of range for antibeta2.

I'm finding it depressing that these are normal for the first time and now seizures have started.

I'm feeling that my body has got to attack itself and as the other stuff seems ok it's picked a new thing to do!

I've continued to work and now the seizures mean I've had to give up my driving licence and my memory that wasn't the best is now even worse and it is impacting my job.

Feel a bit fed up.

Sorry for the moan but I know that you guys on here will understand and tomorrow I'll be smiling again.

Thank you for reading.

[MaryF Administrator]

Hello, I just replied to you on Lupus UK... and put this on: hughes-syndrome.org/about-h...

and also the concept of sero negative Hughes Syndrome, so many of us go in and out of negative testing and some don't pass a test but this does not mean it does not exist, see this paper below: jautoimdis.com/content/6/1/3

MaryF x

[annie330]

Thank you very much for your replies it is much appreciated. I think I will push to see an APS dr as the consultants I see are rheumatologist and neurologist. The not driving means I'm having to spend more time with my hubbie (supermarket ha ha) and I get out of the running around so there's some bonuses. Thank you for your thoughts and kind words. Have a good day x