Cerebral vasculitis.

Hello,

I have been diagnosed with cerebral vasculitis and I have a massive amount of symptoms, just too many to mention.

On my first attack of cerebral vasculitis it left me with a lot of damage to various areas of my brain and although I New I was very different I carried on with my life, which now was so different because my body just would not function the way it used to.

If I had a drink I cud wet myself, I could pass out easily and my immune system was never the same because a simple cold, which to me before my damage would be easy to recover from, and would just take time.

Instead now I would have to be bed ridden and it would take upto a fortnight to get out of my system and I could not do anything else otherwise it would take ven longer to recover.

Since the first attack 26 years have gone by and in that time I have had a few accidents, a car crash where I broke two bones in my back, which I know has bought my present symptoms on very slowly, and I had to finish work in December 2004.

Got married ............. - divorced last year.

And I even tried to work to save my marriage.

I just can't manage to maintain work although I very much want to, so I can recover from this nightmare, as I am struggling getting realistic benefits from the state , although I have told them just how I suffer.

I would prefer not to relie on benefits and would love to work,but I just cannot function correctly , it's unbelievable just how many symptoms I have and how they affect me and how I have to manage my symptoms and pay them respect.

A neuro phychatrist thinks , that a lot of my symptoms could be down to my damage and possibly also be caused by my demyelinating disease or by my brain not functioning the way it should be or by mini attacks of vasculitis.

Does anybody else have similar problems as my whole body is affecting with whatever this is.

Ant.

[charlieab]

Hi Ant

Just wanted to say a quick hello and that sorry to hear that things have been tough for you. I can relate to a lot of it, including divorce last year.

Im sure that others who know much more about vasculitis will be along soon to give more informative answers.

best wishes

[Hidden in reply to charlieab]

Hi Charlie I know a lot about vasculitis , so any questions if I can answer I will as I have done my research through Cambridge and the Johns Hopkins vasculitis centre in America.

It is tough that is for sure and no case is supposed to be the same, but also in some circumstances the treatment can be worse for u , than actual vasculitis.

It is not only frustrating for the person with the disease but because of its uniqueness, it is frustrating for the doctors and consultants.

[charlieab in reply to Hidden]

Hi again

Thanks a lot. Im not sure yet if I have vasculitis. Ive recently been diagnosed with two other autoimmune conditions but these leave quite a few symptoms unexplained. So am going to see vasculitis specialist tomorrow and am hoping it will shed some more light.

Yes, its the treatment options that worry me. My luck has bene so bad recently that I fear that the treatment would induce another illness to add to the list.

Anyways, maybe I can get back to you once I know what is going on, and ask some questions.

best wishes

[zzcat in reply to Hidden]

Hello Talos,

I see that your posting is a year old so not sure you are still active here but if so I hVe a question.

Could you tell me the most definitive way to test for microscopic polyangiitis vasculitis? This or Wegerners is what I have been diagnosed with and am being treated for and I’m wondering other then symptoms how a diagnosis could be obtained.

For the record, I live if Florida but am also a patient of JH as have come up for second opinions in the past.

Susan

[Suzym2u Moderator Vasculitis UK]

Viv's story and this page from the Vasculitis UK website might help with some information and also some shared experiences. Viv is a member of the HU VUK community and may just pick up on your post.

vasculitis.org.uk/living-wi...

vasculitis.org.uk/about-vas...

[vivdunstan Volunteer]

Yes I've been living with cerebral vasculitis since 1994, when it struck me aged 22.

Are you getting any treatment to control the cerebral vasculitis Ant? Because if it is active, or still not adequately controlled, you may need immunosuppressive treatment to keep it under control. That won't take away all the problems it has caused, but could reduce new ones developing, and may make things easier for you.

Also what sort of doctors are looking after your case? Cerebral vasculitis - especially the primary form - is extremely rare, about 1-2 cases per million people. And most medics, even most vasculitis specialists, haven't seen it before.

Happy to answer any other questions, though I may be a bit slow in responding at times

Best wishes.

Viv

[Hidden in reply to vivdunstan]

Been seen by cambridge

Damage to my brain is deep and varied areas

So nobody wanted to take control

Ive have treatment in the past, none for a while

Do u know if cerebral vasculitis comes with a demylinating diease also?

Ant

[vivdunstan Volunteer in reply to Hidden]

No as far as I know you don't get demyelination normally with cerebral vasculitis. It can sometimes be confused with multiple sclerosis which would cause demyelination, and it's often necessary to figure out the right diagnosis between the two.

[Hidden]

Because of the areas of damage in my brain , they thought id got ms

Also at one stage mota neurone diease

But they later diagnosed me with cerebral vasculitis

But i have demylinating disease also.

[wobblypat]

I have been diagnosed with cns vasculitis for 8 years. It has affected my balance,(cannot walk),motor control, eyes, ears, nose, triennial nerve. The drugs I take have also affected my skin and encouraged arthritis to the point I have two replacement shoulders. I also suffer from extreme fatigue which makes me sleep 12 - to 14 hours per nights do have many, many days when I can do nothing.

You are not alone!

[woollysox]

I was also originally diagnosed with MS based on symptoms and multiple brain lesions before they found beading in my brain vessels and changed the diagnosis to Cerebral Vasculitis.

I can no longer work either but have had no problems with obtaining benefits. I have been granted the whole caboodle (full ESA & PIP plus severe disability bonus) as I'm no longer able to function properly on a day to day basis, never mind go out to work. Have you tried using the Work & Benefits site? I think that's what it's called (bloomin' brain fog!). It's been recommended by others on HU and I really couldn't have done without it.

I have balance issues too and have difficulty walking or just standing up straight for that matter, memory problems, driving is completely out of the picture due to lack of ability to concentrate, ditto cooking, holding a decent conversation, following a knitting pattern. I'm incontinent too. Coupled with extreme fatigue and all the side effects from the meds, I'm really not good for anything these days. If I were a horse.....!

As Wobblypat says, you are not alone.