Incontinence and cerebral/CNS vasculitis

[vivdunstan]

I just posted something on my own personal Facebook wall, and thought I should post something here too. I have cerebral vasculitis, for 25 years this year, falling ill in 1994 aged just 22. One of my longest symptoms is severe bladder incontinence, from the brain damage - my brain can’t control my bladder properly. Sometimes cerebral/CNS patients have bowel problems too.

I wrote an awareness piece for the Vasculitis UK newsletter, mostly to educate medics, who often don’t realise this can be affecting their patients, and that it might be from the vasculitis. It’s in the Autumn 2018 newsletter on page 13. I’ll give a link.

Anyway if you have brain vasculitis and incontinence it might be your vasculitis, it needs to be investigated properly (including by an urologist), and there may be things the medics can do to help you. If like me you need to wear pads permanently (for nearly 25 years now in my case) you should normally be able to get these free through your local NHS - I have, for nearly 18 years now, and have my annual review with the continence nurse tomorrow. Key thing is don’t suffer in silence, and get the medics to help you. Read my piece for more info.

vasculitis.org.uk/about/new...

[jojod78]

I havr a permanent cathter in as i have no feeling of my bladder. It was one of the first signs somehing was wrong.

[vivdunstan Volunteer in reply to jojod78]

Oh dear, sorry to hear that. I hope you are as comfortable as can be. Do you have cerebral vasculitis?

[jojod78 in reply to vivdunstan]

Yes central nervous system vasculitis. Just beginning the task of tapering of meds but i have fits so its not going to good.

[vivdunstan Volunteer in reply to jojod78]

Take things carefully. Often medics push a little too hard re tapering, when people might need to go more slowly, or need more long term treatment. If you have troublesome symptoms on tapering, especially neurological, don’t be afraid to tell the medics. Good luck!

[phil3]

I’ve logged onto HealUnlocked ?times looking up Cerebral Vasculitis when I came down with it in 1999 then 40yo and here’s what happened over the last 20yrs.

I started looking for other problems but I did a search on Cerebral Vasculitis and saw what you’ve gone through. I’ve been through similar problems. In 2013 I came down with Stage3 Testical Cancer not that you could’ve had that then in 2013 Bladder Cancer which now requires me to wear pads and that’s mainly when I go out and not near a toilet and I have cystoscopies every 4mnths normally they may not show anything but a few have shown lymph nodes that needed to be removed from my bladder then 2015 came down with bowel cancer which is now all OK but have colonoscopy every year and my last one a month ago showed a Polyp which was removed. Sorry but I do suffer in a bit of silence cause I’m sick of talking about it to all my medics ie Neurologist, Pathologist, Urologist.and my Haematologist. They only deal with their area and let me know results and pass the results to my GP doctor whom I see quite often and knows me quite well and does all the work to put it all together and his file is too large for my likening. The Vasculitis may be OK but I'll always have my short term memory and spatial awarness problem