Cns vasculitis

Got appointment for Lumber punture.Feeling emotional about it all.It's been 7 months of tests.And to think this test may either be the beginning or the end of it all.As if there is inflammation in the csf I have been advised about a angiogram to look at the brain. As they think I may have cns vasculitis.Which I understand is rare.But my neurologist has said it is curable.

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  • I've had 2 Lumbar punctures, so don't be to worried about them. I hope the LP result is negative as for you.

  • Hi Jan

    Try not to worry about your lumbar puncture.. I understand that is not easy to do given you are experiencing many uncertainties at the moment. But try to treat the endless tests as a way forward to more specific treatment plan.

    My lumbar puncture and my brain angiograms were more scary because of the fear of the unknown.

    These tests for me put me on a more monitored and better health care program which currently mean with adaptations to my old life I am officially in drug induced remission.

    Unfortunately there is not presently a cure for cnsv however with the right team around you and a healthy understanding of the facts you can still look towards future goals and plans.

    Initially it is gaining confidence in your own abilities and the situation your illness has put you in..

    I have had cnsv for nearly eleven years now, with high points and low points .

    I cannot say 100% that I have totally accepted that I have cnsv. But I feel that I am going to live my life with cnsv not let cnsv run my life.

    Hope this helps, I am happy to try and answer any further concerns you may have private message or otherwise

    Best of luck, keep smiling

    Jo

  • Hi I have Cerebral vasculitis and my heart went out when I heard read what you are going through. I like most of us went through similar tests lumbar puncture ,MRI scanner etc . It is the best way forward knowledge is power and you and your doctors then know how to tackle things and move you forward ! I have a happy life it's sometimes difficult I struggle to work sometimes and people simply don't understand it !!! If I can help you anyway please just let me know. I am a big believer in yes conventional help medication but also alternative/ complimentary therapies and learning reiki was a turning point for me. Good luck with your tests you have nothing to fear I promise . Kind regards Diane

  • I was diagnosed with CNSV in 2013. The tests will help with the diagnosis. I was treated with Cytoxan after high dose steroids failed. It did the trick. I am in remission from this now and my life is pretty much back to normal. I have a few mild flares every now and then but it doesn't consume my life any more. There are good treatments now. I also used medication but also natural and nutrition (I changed my diet to gluten free, sugar free and high protein and I'm doing much better). Best of luck to you!

  • Thank you everyone for all your reply. It's good to know there is advice and support out there.Coping can be very worrying times.And the help and advice through these times can help alot.Wishing you all the very best ❤

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