Only message me if you have it please.Fed up with text book replys.My neurologist says I may have this.Was interested in any one who has it.Symptoms and any diagnosis tests I may have.
Kind wishes
Jan
Cerebal vasculities : Only message me if you... - Vasculitis UK
Cerebal vasculities
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jan85uk
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29 Replies
•
Lol, get straight to the point Jan. Don't worry no more " text book reply's " from me. 😂
It's like you said I need to know someone with cns vasculities ty 😁😀😂😃
• in reply tojan85uk
No, you need to see a Consultant who has experience in diagnosing CNS Vasculitis. Let's agree to disagree.
wall1409• in reply to
I've recently had a subarachnoid haemorrhage but my ruematologist suspected vasculitis in 2012 . Awaiting second brain MRI on 22/11. Getting horrendous nerve pain down my legs currently. Think it's going to be a long road before I get any answers. Good luck with your enquiries.
Wendy
vivdunstanVolunteer
I've been ill with what is thought to be cerebral vasculitis for 22 years, since age 22.
My story is online at the Vasculitis UK website at
vasculitis.org.uk/living-wi...
I'm happy to answer more specific questions about diagnosis. But often there is not a definitive test for this. If a brain biopsy is done, and you are fortunate, it will find the right bit of brain to show the damage. But often the result of a biopsy is negative / clear, even where there is vasculitis damage elsewhere. There are *no* definitive blood tests for the disease, with patients often normal (it took me a decade to show raised inflammatory markers in my bloods). Lumbar puncture is also often normal. Angiogram can be useful, but again can be false negative, even with the disease.
My diagnosis was done on the balance of probability, following a MRI brain scan which showed multiple lesions, which the consultant felt should never be there in someone of my age. More tests were run to see if it was multiple sclerosis, or another inflammatory disease process like lupus. I also had numerous scans of organs. I did not have an angiogram or brain biopsy though - the consultant at the time (back in 1997) considered they were too risky, and too high a chance of giving a misleading result. So my diagnosis isn't gold standard, but I've been treated for cerebral vasculitis ever since 1998. Also in 1998 I showed evidence of vasculitis in my hands as well.
My case was initially very like ME, and then more and more like MS. It developed slowly initially, without classic headaches or a stroke. So it was hard to distinguish from other diseases. But things have been quite bad for me since a huge relapse in 2004. I have tried many many treatments. But I'm now in a better place illness-wise.
Best wishes.
Viv
vivdunstanVolunteer
As for what sort of consultants are best, personally I have heard the best reports about rheumatologists diagnosing cerebral vasculitis. Often in my experience, and others I have heard of, neurologists are not interested, or think they knew more about the disease than they do, and can be a poor person to diagnose. But others have had different experiences, finding rheumatologists reluctant to diagnose anything brain-related. I was diagnosed by a specialist in vascular medicine (yes, that was his official GMC speciality), now retired.
Vasculitis UK *can* advise you on consultants who they have heard good reports of. You do need that. So please contact them for advice about this. You are likely to get nowhere if you see a poor consultant, or perhaps just the default one available to you locally. Cerebral or CNS vasculitis is extremely difficult to get diagnosed, and you need to find the best person.
I was diagnosed with cns vasculitis in 2010.Following several mini strokes (Tia's) was admitted to john Radclife,Oxford for further tests. they suspected MS.
Initially I was in for three weeks and had a heart scan, angiogram, lumber puncture and numerous blood tests every day. Following these I was diagnosed. To be honest I really can't remember if a specific test confirmed it. They had planned to do a biopsy but in the end decided it was too risky.
After diagnosis I immediately started what was to be a six month course of steroids and chemotherapy. Following this I was on azaithioprine for four years.
I am now off all my drugs and so far no sign of the disease flaring again.
I was under a neurologist but also saw a top rheumatologist in Oxford, who specialised in Vasculitis.. I haven't read any previous posts from you, but would agree with others that you really need to find a specialist.
Elaine
Hi kitty 25, do you know the name of the rheumatologist who specialises In Vasculitis as I am trying to find one in Oxford
Thanks suzy
• in reply toSuzywhizzo
Prof Rashid Luquami. 😀
• in reply to
Oops, spelt his name wrongly but here is the link to him
ouh.nhs.uk/rheumatology/tea...
Suzywhizzo• in reply to
Thank you keyes
Hi, my husband was diagnosed with cerebral vasculitis in 2013. He showed signs for a few weeks of confusion, forgetting names of things, dropping things, erratic driving, major headaches. He had a very stressful job, flying overseas continuously so for those weeks we thought it was pressure and stress of the job. He was out sailing, part of his job, and became disorientated and confused, not following instructions. They immediately new something was wrong and called for the lifeboat to take him ashore where an ambulance was waiting. He was still awake but talking rubbish. He unfortunately at the time was on the Isle of Wight, so the hospital had to keep liaising with Southampton hospital. They were not able to do an MRI scan so he was having CAT scans. Southampton hospital picked up straight away that he had Vasculitis, which was incredible. Fortunately I had contacts at the JR in Oxford, so for 48 hours we fought to get him transferred. Due to bureaucracy we had to go via Southampton Hospital, so spent 1 night there. That is when I was told that he had Malignant melanoma and he had 3 months at the most to live. I demanded that he was taken that day back to the JR where his children could be close to him. By this time due to a seizure he was now in a coma. It was touch and go for a long time, whether or not he was going to survive. He was immediately put on Cyclothozimde and large doses of steroids. The brain was showing two large bleeds. My husband was now under Professor Talbots team at the JR, he has been incredible. After 6 months of Chemo and steroids, and nearly 3 years on, he has done extremely well. He is not back at work as it has left him with short term memory loss and cognitive issues, so his job as an MD would not be appropriate. We saw Prof Talbot a week ago, who now does not need to see Richard as he is very pleased with his progress. We saw Prof Luqmani's team this week, who have decided to keep him on Azathioprine for another year, so that will take him to his 4 years. They are brilliant, and they do have an emergency no. you can call if you are worried about anything or need advice. Richard has experienced several viruses this year, and has been ill in bed, but this is due to the immunosuppressant. We will be seeing Prof Luqmani again in 6 months, but they have kept him on 100mg daily, as they are worried it could cause a flare up if they take him off it now. Richard had extremely high blood pressure when he became ill, so he continues to take medication for that. I believe he became ill due to leading a very stressful life, which led to extremely high blood pressure for some time.
I cannot talk highly enough of the Professional team we have been lucky to have treating Richard, and would urge you all with this condition to speak to this team.
Richard so far is lucky and leading a fairly normal life. One thing he is doing which I believe has helped enormously is excersing. He cycles 100k over a week.
I hope this is helpful and happy to answer questions.
Sharon
ps.please excuse my spelling.
VIv has hit the nail on the head. Cnsv is often diagnosed by symptoms and lack of positive results. Ie. Elimination. It takes time for your consultant to do this and this can be frustrating. You seem angry too. This group is a good means of support. Sit down with a pen and paper (and maybe a friend) to work out what it is you need from your consultant, gp and the group. Then reach out as required. BTW. Although I have cnsv I find there is cross over with other vasculitis, particularly in emotional reactions to chronic illness.
Hi Jan, I have CNS vasculitis diagnosed by my Neurologist. I started to see my orthopaedic surgeon after I noticed my right foot turning in and I thought it was because of my latest right knee replacement. I was also falling over for no reason. He asked questions but stated its neurological. He put me in touch with a neurosurgeon who after scans MRI and CT picked up on severe OA of my neck and lower back. He then said I needed to see a Neurologist. He did lots of tests which showed lots of neurological problems and he said he was almost sure I had CNSV. I had more MRI CT bloods and a test for epilepsy because of the falls. When I saw him afterwards he said I had CNSV and I started treatment about 12 months ago. I'm seeing a Rheumotogist in October as well. I hope you can get some satisfying results soon. Take care. Linda
Thank you all for your replys,they are very supportive and give hope to me getting a diagnosis.I would of replied sooner bad have been having painful pins and needles in left hand,and being a left would of struggled a bit.
Best health wishes to you all
Its been a better day 😊
My daughter has cns vasculitis, she is 11 years old and was diagnosed last year with vasculitis but we were told this Feb/Mar that she has cns and not pcns (primary cns) only her brain is effected at the moment. Her symptoms are headaches mottling all over her body exhaustion but we're lucky she's under gosh and the LGI for her cns were also lucky because upto now she's been stable and hasn't needed medication 6 monthly scans and loads of hospital visits and stays and it's only early days she's only had this terrible illness about 2 years as far as we know it just showed up on a scan 3 months after she had a stroke it took another 12 months to get a proper diagnosis of cns and as Keyes said you need to see a consultant who specialises in cns not just talking to someone who has it no 2 cases are the same.
Hi, hope you dont mind me asking but what was their reason for the diagnosis of cnsv not pcnsv?
Hi I don't mind you asking.
I was told it was pcns because it was only affecting her brain at the moment as pcns usually effects every organ in your body not just one, I was told that the diagnosis could change to pcns later because there's no guarantee that the cns won't attack other organs but because this type of vasculitis is very rare in children there's not a lot of information out there and just before my daughter was diagnosed I was told she didn't fit the criteria as she didn't have the usual symptoms nut luckily we've got a very good neurologists in leeds who used my daughters case as a study at a conference for the world's leading neurologists and one of them picked up on the scans she'd had done and recommended sending them to gosh to a vasculitis specialist who is the top of her field in children's vasculitis. Hope this answers your question Melon but if you've got any more don't hesitate to ask and if I can answer them I will.
That's odd. I thought it was primary cnsv if it was just brain involvement and secondary cnsv if there was another system affected by vasculitis. Anyone out there that can explain or clarify please?
• in reply toMelon
That was my understanding as well Melon. I think that CNSV in children can present differently and can be a different disease than the one that adults get so that maybe explains it.
Im not sure Melon, I can only go by what I've been told it maybe like Keyes said that it's different in children all I know for sure is its only effecting her brain at the moment, although they can't rule out that it was cns that caused her corrotated artery to burst and then cause a stroke via a blood clot in her brain. But because the vasculitis didn't show up at first it was on a scan 3/6 months after her stroke that it suddenly appeared and as I haven't spoken to the specialists at GOSH yet it's all done via LGI I can only ho by what they tell me. I know that it's very rare for normal healthy children to have a stroke and even rarer for them to have cnsv without having any symptoms all I was initially told by our neurologists was that she didn't fit the criteria for vasculitis but she didn't fit the criteria for a stroke either but she had one at 9 years old. We're due back at Leeds LGI soon so I'll be able to ask more questions then as we've not seen her consultant since we got the letter confirming cnsv and not pcns.
Sorry I can't answer your query properly hope this helps.
Thanks for the update. I really feel for you. It's one thing being ill yourself but your children... really difficult.
Don't forget to write those questions down - so easy to get sidetracked when there is so much information being exchanged during a consult. Good luck. We are quite close btw. I am in Cheshire.
I know it's hard cos all you want to do is protect them and when something like this happens it makes you feel like you've failed.I live in East Yorkshire near hul.
Sorry should say hull
Quite a trek to your consultant then. 🙁
Does this mean ur brain eats itself? My lungs eat themselves lol
