Sticky Blood-Hughes Syndrome Support

Negative Anca, normal antibeta 2 glycoprotein and started with seizures

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.

3 Replies

Hello, I just replied to you on Lupus UK... and put this on:

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:

MaryF x


Once you have been dx with APS then you don't stop having it just because your tests are negative. Actually its probably a good thing if the antibodies are in the normal range because it means that the inflammatory process is not in an acute stage. So please don't think that you have to prove yourself to anyone by passing the tests!

I can understand how upsetting it is for you with this latest set back. I had a similar time last year after I had a brain scan and they found something which usually automatically indicates epilepsy. I had to endure months of tests and genetic tests and the thought of losing my driving licence became very real. I had only just got it back after my stroke so I was very nervous and know what it must be like for you. But don't give up, things can improve and hopefully they will get on top of this and if so you can get your licence back in time.

Make sure your anticoagulation is at the right levels and that any other medications that you need are fine tuned. You need to make sure that you find a really good APS Doctor who can put all this together.

Try and keep smiling because anxiety and stress will only make things worse. Easy to say I know. We are here for you if you need anything. x


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


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