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

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  • Have they checked you out for Hughes Syndrome? Simple blood tests, and it does sometimes get overlooked particularly if you are Seronegative! There is a paragraph in here regarding this, at least rule it out! jautoimdis.com/content/6/1/3

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

    Mary F

  • Hi annie330

    So sorry that you've developed seizures! Lupus can be such a difficult illness to cope with! Has any treatment been suggested for them? Have you talked to your GP about them? A referral to a neurologist could be helpful. When do you see your Rheumy again as he could do the referral. Hope you feel better soon.x

  • Thanks for the replies, I do have hughes and am on warfarin. I see a neurologist (rheumy referred me a couple of years ago think I'm a difficult patient as I've got a lot going on and I don't quite fit into any one category). Neuro started me on a medication just before Christmas and I had one of the rare side affects (can't really remember Christmas Day), I've now started a different med, started it last week. I've had EEG last week and I'm having a lumbar puncture on Friday. I was supposed to go back to rheumy on 20th feb (he said that by then the neuro would have all his results) but last week I got a letter cancelling that appointment and another one hasn't arrived yet. Think first thoughts were to ensure the rituximab hadn't caused the seizures to start, as just before they started I had my 5th lot.

    Sorry I just wanted to have a moan.

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