CNS vasculitis

Is CNS Vasculitis curable? ??

[Hidden]

Hi Jan,

No type of Vasculitis is " curable " in the sense that you take a medication and your symptoms go away for good. If you get timely and appropriate treatment from a Consultant who has experience of CNSV then you can hope for remission ( where medication and treatment controls the disease and lessens your symptoms ).

Much depends on how much damage has been done to the brain and whether it is permanent or can be reversed by treatment. CNSV can be difficult to treat as it is very rare and there isn't a good evidence base for treatments, very few Dr's have experience in treating it.

You can always phone the VUK helpline for support and advice, I will post the link.

[Hidden in reply to Hidden]

vasculitis.org.uk/helpline

[MiaTilehurst]

Hi Jan

I was diagnosed with CNS Vasculitis just over 10 years ago. Stay positive, things will improve once you are on the right medications. Nowadays I am reasonably stable with the occasional flare. I have a good quality of life, maybe not what I had planned for but good nevertheless. I have been able to travel to Canada, Australia and New Zealand - something that would have been impossible before diagnosis and treatment as I was so poorly.

Take one step at a time and don't look too far into the future. Treatment is a 'marathon' not a sprint. This condition is treated aggressively because of the huge potential damage of stroke, blindness etc if not well controlled.

Different patients experience different symptoms, depending on what areas of the brain are affected. Please feel free to send me a personal message if I can be of help. I am happy to answer any questions you may have as you journey towards your own diagnosis. You may also wish to read My Profile which gives a brief synopsis of my journey.

When I was diagnosed VUK was in its infancy. I found lots of good information on The John Hopkins Hospital website and the Mayo Clinic website both renowned teaching hospitals in the U.S. Arm yourself with as much information about your condition as you can - but be selective on what you read on the Internet. Knowledge is power and it will make you the best advocate for your care.

Mia

[starfish69 in reply to MiaTilehurst]

Hi Mia, when you talk about flares, what are we talking about in your case as every time I seem to have had a flare it results in a stroke? It's great to know that there are people still doing well after 10 years living with this disease .

Darren

[MiaTilehurst in reply to starfish69]

Hi Darren, I know I am sliding into a flare when some clinical symptoms I experienced before being diagnosed return. I get double vision, night sweats, weakness down left side and terrible fatigue. Cognitive abilities decline as well, I find myself reading and rereading a paragraph without taking in any information. Unfortunately my blood test results don't give any warning, the CRP may be slightly raised but not to a level to cause concern to my carers. They have now learnt to listen to my concerns and not overly rely on the blood test results as they did at first. Managing to balance side effects of drugs and damage caused by the disease feels like walking a tightrope. Too high a dose of drugs increases toxicity, too low and the disease is not kept in remission.

I hope that you are receiving good care from knowledgeable medical staff.

[Suzym2u Moderator Vasculitis UK in reply to MiaTilehurst]

Vasculitis UK did not exist 10 years ago - VUK has only been around for 6 years and in that 6 years Vasculitis awareness with both the medical profession and the public has come on in leaps and bounds 😊

[MiaTilehurst in reply to Suzym2u]

I thought that VUK morphed from the Stuart Strage Trust, which was around 10 years ago.

[Suzym2u Moderator Vasculitis UK in reply to MiaTilehurst]

Vasculitis UK work in a totally different way to the SSVT. The Vasculitis UK new website was not launched until 2012. vasculitis.org.uk

[Suzym2u Moderator Vasculitis UK]

Where are you seen for your CNSV or as it is also known as Cerebral Vasculitis ? Jan CNSV is extremely rare , 1 per million here in the UK. It is important you are seen by doctors who have experience of treating CNSV. You can call the helpline as Keyes suggested and VUK will help with advice and/or names of doctors who have experience.

[Suzym2u Moderator Vasculitis UK]

Jan you might want to read Viv's story from the Vasculitis UK website. It took many years to diagnose Viv's CNSV ( Cerebral Vasculitis )

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