Hi,anybody with CNSV? Just recently been diagnosed after 3yrs of tests

[cazwad]

[vivdunstan Volunteer]

Yes. I've been ill since 1994, diagnosed in 1997. Battling on My case was featured in the Vasculitis UK newsletter, and is online at vasculitis.org.uk/living-wi... where you can read about the course of my illness, the symptoms I have, treatment I've tried etc. Happy to answer questions.

[cazwad in reply to vivdunstan]

Hi Viv,Do you suffer with severe pain throughout the night? I get pain in my shoulder,s,back and leg's, it is driving me mad,obviously causing lack of sleep,it does ease during the day but this may be the MST kicking in

[vivdunstan Volunteer in reply to cazwad]

No I don't. Have you talked to your GP and consultant about this? There are painkillers that they can give to help, including ones that target neurological pain directly. Similar to the drugs that are used to ease pain for people with MS.

[cazwad in reply to vivdunstan]

Cheers Viv, Am on pregablin 400mg per day,mst 60mg per day and oramorph when required but the pain just seems to increase at night,i will speak to my gp soon,thanks anyway

[Tinabelle]

Yes, I was diagnosed August 6, 2014. I almost died from kidney failure from this. My kidney function is now normal. Still learning about it. I am on high dose steroids and Cytoxan chemotherapy monthly. I have been diagnosed with Rheumatoid Arthritis, Lupus, CNS Vasculitis and CIDP. Praying I can get IVIG infusions and thankful for every day and all the little things I once took for granted!

[kitty25]

Hi, I was diagnosed relatively quickly after having several TIA's in 2010. I had a lumbar puncture that came back negative, but I was very fortunate to be admitted to John Radcliffe where my consultant and rhemutologist had experience of CNSV. After an MRI and angiogram they wanted to take a biopsy, but as I had further Tia's that was abandoned and I started treatment straight away. I had chemo and steriods for 6mths and am now on Azaithoprine. It was a very scary time, at one point didn't think I'd see my family again, but guess am now as well as i'm ever going to be. I go for monthly blood tests when I can remember and don't have to see my consultant for a year, so atm all is well as it can be. Take care

[Hidden]

Hi iam sorry it took them so long to diagnose you that's awful. I hope things get better for you soon ! It's a very lonely illness. I have dealt with it using alternatives reiki and my earthing mat. I have been on azathioprine since 2004 50 mgs and never had it put up so iam very lucky ! I have learnt a lot from this condition and love to stay as positive as I can. I love the scientist dr David Hamilton as he explains things scientifically that iam aware of as an therapist. drdavidhamilton.com/ using science to inspire. I wish you well and if I can ever help just let me know.Diane x