hi cruz, i have wegeners and may have secondary brain/cerebral vasculitis - main symptoms are tiredness, especially if i apply my mind to something/concentrate alot; also migraine symptoms++ - numbness all limbs and face,tongue on and off, lasting weeks, headaches, blurred vision on and off also. i have just had a brain MRI and await the result. I have had wegeners for 7 years and have had to stop work/retire. if i do have brain vasculitis, in retrospect i have been having attacks for many years which i assumed were migraines. hope this helps.

hof-man

This was discussed at the Vasculitis Masterclass yesterday, what type of Vasculitis do you have? Cruznlcsw

Hi, I have cerebral vasculitis - diagnosed 4 years ago, following mini strokes. I was diagnosed following an angiogram & mri scans. I was given Cyclophosphamide for six months and steriods, then put on azathioprine. I've been in remission ever since and the consultant has now requested for me to come off of the drugs. I'm not happy about this as I don't want a relapse. Don't know what to do

I have been very very lucky (so far) that my symptoms were not worse and I'm now living a relatively normal life and also that I was diagnosed and started treatment within weeks of my first mini stroke.

Take care

Elaine

I used to have, but it has improved immensely. I used to have a full time job, however, with my circumstances (I also have 3 children, one of whom is disabled) and health, I now have my own part time dog walking business, which fits in with the family and if I'm not feeling too great, I don't need to take on too much work.

Are you on any treatment at the moment? When were you diagnosed and what were your symptoms for cerebral vasculitis?

I have primary cerebral vasculitis, since 1994, diagnosed 1997. I wrote my story up for the Vasculitis UK newsletter and it was later put on their website. You can read it at

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

Thanks so much everyone for your input, and support. I don't have any support here in Santa Cruz, except my disabled daughter. Everyone appears to have flown the coup except for a couple of friends. Blessings!

I also have cerebral vasculitis, diagnosed in 2010, my symptoms were confusion , gait problems, speech, walking, cognitive, pain, incontinance , I was treated with cyclophosphamide in 3weekly pulses with high dose steroids . I had a pulmonary embolism 6months after diagnosis treated with Tinzeparin . and warfarin .for three years I was in remission then had flare up rheumatologist increased my Methotrexate and steroids and again I improved. I had an MRI, CT scan, and lumber puncture during diagnosis. Hope this answers some of your questions . Georgiana.

Hi I have cerbral vasculitis mine started in 2000 with what I was told was a stoke, it took a few years to get the diagnosis it went from migraine, to angeopothy then cerebral vasculitis. Mine starts with left side headache then numbness face nose etc, problem with eye, then can lose the use of left arm and leg, I have been told on several occasions it's a Tia or stroke but my consultant says not. I had several years on high dose steroids, then in 2012 had six pulses of cyclophosphamide. I then went eight months without any big attacks. In September 2013 had an attack whilst in France and again told it was a stroke, my consultant said it was a flair up and suggested a second course of cyclophosphamide which I am in the middle of at the moment. I also get very tired and feel weak. hope this is helpful to you.

Hi All, my sister was diagnosed with cerebral vasculitis in June 2013. She has had 1 flare up since and has been on cyclophosphamide, and more recently Azathriopine along with high dose prednisolone. However of late, she has had some facial numbness and I wondered if anyone else has experienced anything similar?

I have the same problems which were all under the diagnoses Multiple Sclerosis - now I'm told I have Cerebral Vasculitis - little aneurisms ready to blow? Good grief. Now what?