Hi All,Im new here.
My 19 year old daughter is currently in hospital under a neurologist,i was told yesterday that she has vasculitis which has attacked the small blood vessels & nerves in her brain,she has been poorly for some time,my GP was treating her for vertigo,Has anyone any experience of this type of vasculitis?Im worried sick & need to know what the prognosis will be.
Yes, I fell ill with this when I was just 22. I was initially misdiagnosed with ME, but the symptom pattern changed to look more like multiple sclerosis, and I pushed for fresh tests. I was rediagnosed with cerebral vasculitis in 1997. Mine affects the small blood vessels in my brain, has caused lots of strokes, and a huge range of neurological problems. My case is very similar day-to-day to multiple sclerosis.
Prognosis varies. If she's diagnosed quickly (I wasn't) and treated effectively then she could do very well. I know quite a lot of people with cerebral vasculitis who have responded very well to a relatively short dose of treatment, and have got off the drugs, and are largely functional again. Any brain damage that is caused before then is likely to be irreversible, but the brain can work around damage and form new pathways, so there is hope.
My case is difficult though. My form of cerebral vasculitis is very aggressive, and we've struggled to control it, especially since a huge relapse (when it returned big-style) in 2004. But that needn't be what happens to your daughter.
If you click on my user name in here you will be able to read my blog posts about diagnosis and symptoms etc. But that's my case. I'm hoping your daughter has a much better outcome, and send her best wishes.
If you want to contact me directly about this feel free to send me a message (again click on my user name to see that option) and I'll give you my email address then.
Oh and vasculitis as a primary disease of the brain is extremely rare. The incidence is about 1 in a million. I've made contact with others with this, especially in North America (where it has similar incidence), especially through Facebook. It's a very very rare disease though. Few medics will be familiar with it.
Best wishes.
Viv
Thankyou Viv,i did read your blog,i think my daughters is serious as everything you say she has been suffering with for quite a while,she became drastically confused 2 weeks ago(insisting it was Christmas day)So i rang an ambulance,she is now on her 12th day in hospital after undergoing various tests,lumbar puncture,Mri,s etc..She falls over,is constantly dizzy,one of her eyes is blurry,her hearing is affected,she vomits a lot,shes bladder incontinent,shes still confused but not as serverely as 12 days ago,they have given her 3 high doses of steroids through I.V & i think that helped,I have seen her mri scan myself,she has various white lesions all through her brain but deep inside,hence why it wasnt detected on a CT scan.
I was pretty much convinced she has MS,i cannot believe she has something so serious...
Those symptoms sound very similar to how I was in the early years (it took me 3 years to be diagnosed properly). High dose steroids will work well to stabilise her, but she's likely to need some form of chemotherapy treatment to get things under control properly. And long-term she may need to be on a maintenance therapy of immunosuppressive drug plus possibly small steroid dose. That keeps the disease from recurring / going out of control.
My mum was convinced I had MS too. She had quite a big argument (which I didn't know about at the time) with my GP about it ...
I agree with everything Viv has said. Not all local/small hospitals have the correct knowledge or expertise to recognise, diagnose or treat Vasculitis.There are centres of excellence in Birmingham, Cambridge and Aberdeen. There are also individual consultants who have a special interest in all types of Vasculitis and we do have a list. If you would like to email John jandsmills@btinternet.com he maybe able to help too. All the best Susan
Hi Viv, I have contacted John & Susan through facebook so they already know that i had a formal diagnosis on my Jessica yesterday.
She has Susac Syndrome,it is extremely rare & it is a form of vasculitis,there is not enough information available on it because it apparently only affects 1 person per year in the whole of the world.
It is still being researched.
I have her home for a few hours & she has been started on high dose steroids & everything you said in your previous answer is also being considered.If all is well on Monday she will be coming home
In answer to your question about the possible outcome long term, a it were, it is very hard to say. However, with your caring, the fact that she is young and is clearly very loved, the 'prognosis' is, I would suggest' fairtly good. Good luck anyway! Andrew; let me (us) know will you?
Hi, I am 53 and have had Cerebral Vasculitis, now called Central Nervous System Vasculitis, for 13 yrs. Mine started with a headache, then muscle aches and pains plus severe balance problem, but not vertigo. It took 8 yrs to get mine diagnosed as vasculitis, then a year of tests before getting what they call a working diagnosis of CV. Not all people will have same symptoms and new ones or old ones can occur. I was diagnosed by a Professor Hawkins at Stoke on Trent City General Hospital. My sister found him on the internet after another spell in hospital with severe face pain. She had had enough of the symptoms I was getting and no local Doctors/Specialists knowing what it was and how to treat it. I live in Lincolnshire and was very glad of the day I met Professor Hawkins. I am quite happy for you to phone me and talk further as nobody in my area has CNS.
Hi JRAN, I was diagnosed with CNS Vasculitis at the end of February 2014 by Professor Hawkins following three hospital admissions for what they initially thought were mini strokes. I live in Stoke on Trent and my original consultant was very dismissive but I managed to see Professor Hawkins and I think he saved my life because I was so ill. I'm now having IV Methylprednisalone for 3 days every three months and while I'm not recovered I'm better than I was. Happy for you to contact me. Not sure how the private message works.
I need help to understand this also my daughter has had a major stoke caused by cerebral vasculitis, please how is your daughter now
Hello .I have just found these posts, I was diagnosed with Cerebral Vasculitis 4years ago, I was fortunately diagnosed very quickly only three days after being seen by a GP. I spent 11 days in Hospital ,Had MRI, CT, Lumber Puncture, then intravenous cyclophosphamide and prednisilone. ( the cyclophosphamide continued in pulses of every 3 weeks for 6 months with oral prednisilone) since then ,I have been on Methotrexate and prednisilone. I have had a flare a year ago, but with an increase in medication I am stable again. I live in south Shropshire, was treated in Hereford Hospital by a consultant Rheumatologist, who liased with Birmingham. My symptoms included incontinance of urine , confusion, unsteady gait , difficulty in speech,unable to and unwilling to find the right words,multiple pains in muscles and joints ,I did'nt have headaches. I did'nt recognise that I was unwell. It was fortunate that my youngest Daughter( who is a nurse) realised I had a problem and acted quickly took me to the Dr. and insisted on action. I am 75 (a retired nurse) and count myself lucky to have no apparent long term disabilities. I hope these comments are of use .
I have Vasculitis and, my last bout was so bad . They told me I would have trouble with short term memory loss. I do . It was so bad that I was hospitalized four times in two months time.
It has been almost three years & I still have problems with memory . This could be due to many other things. I had contracted Legionnaires & MRS both.
i can only speak for myself on this. I am 56 years old & your daughter is young & able to fight this easier than I.
I do wish you luck ,
Chrissie
Thank you to everyone who has contributed to this thread for what seems like the past 7 years. I am struggling with Cerebral Vasculitis, GCA, as well as in the legs. Extremely difficult to control as all of you know.
So after multiple TIA & strokes and mild hearing and vision loss I am now on low dose steroids, one IV chemo and one full time pill form chemo which is rapidly bringing down the symptoms.
I do believe medicine has progressed and hope in future patients are diagnosed much sooner than it appears it has taken all of us.
Not vasculitis
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