After leaving hospital yesterday I feel a bit of relieve but also fear.My neurologist has already told me he thinks I may have cerebal vasculities.And by having tests done it is eliminates and helps with diagnosis.So I feel that my vessels to my kidneys are all good.
But what's next???If there is no sign of anything to do with my kidneys,can it be my brain?I have already had a Mri angiogram and there is inflammation there.
Cerebral vasculitis is vasculitis in the brain or central nervous system. That's exactly what it means. And damage there can cause problems controlling many parts of the body, including in the bladder.
Vasculitis UK has a useful information page about this form of vasculitis, also known as central nervous system vasculitis.
vasculitis.org.uk/about-vas...
I have been ill with cerebral vasculitis for 22 years.
Jan, I am replying to this mainly because it's important that people coming to this site and reading the posts get the right information.
The facts are
An ultrasound of the kidneys can't diagnose or rule out Vasculitis of the kidneys.
Central nervous system Vasculitis ( CNSV ) is very rare and very difficult to diagnose. The diagnosis can't be made on a MRI scan alone. A lumber puncture is needed to rule out mimics ( there are lots of mimics for CNSV ) and a brain biopsy is the " gold standard " test although not possible for every patient.
The most important question to ask a Neurologist is how much experience do they have of diagnosing CNSV. If they have no or little experience then you need to see a Consultant who does to ensure that the diagnosis is correct.
Dear Jan,
Yes Vasculitis can attack the brain-it did mine! Along with my heart, eyes, kidneys (as I have already told you, and it has also caused rashes, Rheumatoid Arthritis (though proving a 'direct' link is impossible). My 'odd' aches & pains, 'tummy troubles' (yes all of them) and so on ARE, almost certainly, all related. So too is the constipation, yes that unending, pain in the arse (quite literally) soddin' awful constipation.
By the was Keyes is right about the scans not necessarily being that effective, though I have found that a good many are. So perhaps my experiences are different to Keyes experiences. You will find that this is true, of a lot of 'things' Vasculitis-one person's opinion/experiences are NOT always the same as another's. I guess that is just another 'complication'. to add to the mix!
In any event Jan I, indeed all of us, really do hope that you receive the correct treatment, and that it gives you relief of your condition (not least of your 'poo'!).
Very best wishes
AndrewT
Did you have a kidney biopsy??as I have a message saying that these scans are used in preparation for a biopsy???
Not sure,as I have not been told this by my consultant.
Ty for replys
Dear Jan,
I had a Kidney Biopsy quite some years ago for what seemed, at the time anyway, something entirely different. (With the benefit of 'hindsight' there may have been, though this is far from definite, have been a connection.)
'They' do give you a Biopsy, on your new Kidney, within hours of the Transplant but again this is clearly unrelated. It is however quite possible, but I can't say exactly how likely, that you may need a Scan/Biopsy/Examination/Urine sample(s) as your Diagnosis/Prognosis progresses.
Sorry that I can't be of more help Jan. My very best wishes are with you at, what I know, must be a difficult time, for you.
You will be in my Prayers.
Kindest wishes AndrewT
Adult HSP iga nephropathy
Does vasculitis increase the risk of DVT?
Help, a friend suffers from rare form of vasculitis (not sure of type sorry) and giving up hope!!!
1st post any advice welcome
Has anyone experienced the following
