Full body c.t scan for vasculitis! - Vasculitis UK

Vasculitis UK

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Full body c.t scan for vasculitis!

nanny4 profile image
6 Replies

Can anyone tell me if a full body c.t scan can pick up scarring on vessels etc? And also how a body. c.t scan may be able to tell if my daughter has vasculitis,she has severe sle,but her renal and neurologist feel she may have multi system vasculitis,she had swelling on the brain and spinal cord which went down with the treatment for lupus,she had so many symptoms ,to many to list,but her skin,heart valves kidneys aLl have scarring,she was going to have a few biopsies,but her neurologist decided she should have a full body c.t a.s.a.p ,then biopsies if necessary.

Any advice,support would be much appreciated,anyone's experience with vadculitis dx.thank you in advance,Sandy.

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nanny4
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JElsom profile image
JElsom

Hi. Sorry to hear about your daughter's condition. I have takayasu's arteritis which is Vasculitis of the large blood vessels. I was eventually diagnosed by having a ct scan ('eyes to thighs' as they once said) and have had several since as well a larger number of MRA (Magnetic resonance angiography) scans. These show thickening of the walls of the arteries which is either active inflammation or scarring. These scans can't really determine which. A PET scan is the only way I think of showing where the active inflammation is. I've had a couple of these too but they seem more reluctant to do these regularly because of the radiation (and cost I'd imagine). I hope you manage to get a diagnosis soon. Jane

PatriciaAnn profile image
PatriciaAnn

Not being a doctor I can't answer that question, but what I can say is that before I was finally diagnosed I underwent x-rays and several scans one of these was a whole body scan. The scans provide detailed pictures of the internal organs so they must be an additional aid in diagnosing vasculitis or other problems which probably look similar.

No doubt once they have the scans they will have a better idea of exactly where to carry out the biopsy if they think it is vasculitis, and if they think a biopsy is necessary..

Sorry I can't be more helpful, but hope that is of some use.

PatriciaAnn

Pat quite rightly suggests scans are often part of the diagnostic procedure. They also create benchmarks which can be extremely useful in evaluating how the condition is progressing and responding to treatment. Generally consultants don't use full body scans just for the sake of it. The procedure is expensive and CT scans in particular can be harmful if repeated regularly.

In my case, a scan was used to investigate the extent of narrowing of one of my bronchi and this was then modelled in 3D by computer software so the surgeon had an idea of what he would encounter during the dilatation procedure that was to follow. The scan clearly showed the narrowing but it was impossible to tell without visual inspection whether the disease was active or not in that location. Unfortunately not all hospitals have such sophisticated modelling software.

Healthy wishes to you and your daughter.

nanny4 profile image
nanny4

Thank you everyone for your responses,I will pass the info on to my daughter,it is very,very much appreciated,it always helps when it is explain by people who have been there.I look for advice for my daughter,as she is so busy with work 50 plus hours a week twin 3 year olds also, that she doesn't find the time to read up on lupus etc,she is fine with me enquiring on her behalf,bless her,thank you all again.

Take care Sandy.

HisLordship profile image
HisLordship

I went from Dec 2002 till May 2011 with all the classic symptoms of large cell vasculitis.

I had numerous CT,MRI and Ultra sound scans all showed nothing.

We moved home and changed hospitals and met a new consultant.

I was sent for a PET scan and within a month was diagnosed.The scan showed inflammation around my aorta and aortic valve.

Sadly I have not responded to any treatment from the most basic right through methotrexate,imflixmab and finally chemotherapy.

I have been told my chances of recovery are poor so fight for that PET scan.

Kind Regards.

nanny4 profile image
nanny4 in reply toHisLordship

Thank you for your reply,I will let my daughter know about the PET scan,I have not heard of it, so I shall have a look now.she is due to have. a scan on Monday involving dye, I have to apologise,my ability to post a reply is being hampered by my rubbish mobile phone.thank you,take care, sandy.

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