cerebral vasculitis

[magcor]

Have had this for 19yrs

Has anyone with this find / think that there is vasculitis in other parts of their body or does the other symptoms / problems all stem from cerebral vasculitis?

Dont think I have worded this right

[vivdunstan Volunteer]

I've had cerebral vasculitis since 1994. Although I once showed vasculitis in my hands, when on IV drips for a week after catching chickenpox, I have never otherwise showed any signs of it outside my brain. So mine is primary isolated cerebral vasculitis. I have a wide range of neurological symptoms, affecting many parts of my body. These are a result of the brain damage. For example I can't control my bladder properly, due to the brain damage. For a list of my symptoms see my blog post about my case at vasculitis-uk.healthunlocke...

[AndrewT]

Dear Magcor,

The unfortunate answer to your question is 'well yes probably' or 'in all probability yes' or something similar.....Sorry!

Vasculitis can, and often does, affect the whole body; that is all the body is 'vunerable' to attact from vasculitis. The correct drugs can 'control' the condition meaning you should get far less, or preferably no, 'flair ups' of the condition. I do hope that you are found the correct medication, for the type (strain) of vasculitis that you have. Please let me (us) know, will you?

Good luck anyway

AndrewT

[Hidden]

Hi magcor,

I know what u mean, as the body management system is the brain so it can seem that way or you can have cerebral vasculitis that affects your body systemically, I bet you know all this though don't u mate.

I have not exactly the same as no case of vasculitis is the same, they can be similar.

But all I can tell you , it's crap because your whole life you are told that exercise is the way to keep yourself healthy!

Well what about if exercise brings on your symptoms and infact doing normal functional things does also.

I know I need some serious help at the moment magcor, and if I don't get it I'm going to have a proper bad accident.

So we will see

The Johns Hopkins vasculitis centre is a good website and you can sign up to there newsletter , which can be helpful.

Remeber you know yourself what u can do so be careful stretching yourself.