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.
Written by
annie330
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hi annie I found this site was a good sight I don't comment much but do read every day I found it helpful sorry to hhear about your seizures and keep your chin up I sometimes get like u then I tell myself behave yourself and it does work 4 me anyway lol u take care
I'm sorry to hear you're having such a challenging time with your health but please don't think you're moaning. Not being well is often as mentally debilitating as it is physical (the two are inseparable in my opinion) and having support with our emotional needs is just as important as receiving appropriate medical help.
Your case is clearly not straight forward and it appears your clinicians perhaps don't have the specialist experience required to treat you properly. My suggestion would be to ask for a referral to somewhere such as the specialist vasculitis and lupus clinic at Addenbrookes in Cambridge which is run by Dr David Jayne who is one of the world's most eminent specialists in the field. If your GP or consultant(s) are reluctant I suggest you contact the centre directly and have no doubts they will happily see you. Their contact details can be found at cuh.org.uk/addenbrookes/ser...
This is a wonderful, supportive and well informed community so please don't suffer in silence or always assume that 'doctor knows best'. I'm unaware of your location but perhaps you might consider contacting your nearest Vasculitis UK support group where I'm sure you will be made very welcome. Details can be found at vasculitis.org.uk/about/fin...
Thank you for our reply. I do need to pull my finger out and was thinking that early, John has given me help in the past and I looked into getting referred to Dr Jayne but I got told that once I did that I would always have to go there. I then got the rheumy to say I go and it wouldn't affect them still seeing me but I went through "a feel ok stage" and left it!! Which I know was stupid. I'm going to look at sorting it out but will have to decide whether to go to dr Jayne or APS o ask for both. I'm up in Leeds.
Hi Louise, I remember you. That was ages ago. I told David Jayne what your consultant in Leeds said and he was really shocked to hear that one of his professional colleagues should behave in such a way. Get yourself a referral to Addenbrookes from your GP as soon as pos. Who is APS?
It was my GP that didn't want to refer me. APS is anti phospholipid syndrome also called Hughes. Any there's the question mark over all three things, vasculitis, lupus and APS and I think that made me not push as wasn't sure who was best to see. But I guess that start seeing one and see what they make of me.
You've helped me loads over the last two/three years and it is much appreciated.
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