Hi , new to site, my Dad has had WG for the past 8 years with many ups and downs and finally after a long haul is in remission ,

[lolly47]

For last year starting getting a tremour and now is having trouble walking , he now takes no pred, had 2 big brain scans nothing showing up !! anyone suffering from this awful thing

[vivdunstan Volunteer]

What sort of brain scans did he have? They don't always show up damage in the brain. MRI is more sensitive than CAT scan, but even so can miss things.

I have cerebral vasculitis, since I was 22.

[lolly47]

Hi has had ct and mri , they said he may have frontal gait dyspexia , now saying not sure has app on friday for trial drug !!! for what my question is ? they did say that wg started in brain !

[John_Mills Volunteer]

Hi,

WG does not usually start in the brain, although it can affect the brain. There are various types of vasculitis, including cerebral or Central Nervous System vasculitis. These are not always easy to diagnose and share symptoms with other diseases. There are more refined types of MR scan that can show more detail.

John

[lolly47 in reply to John_Mills]

It's been quite hard as he keeps a lot to himself , he is having a really hard time walking at mo , I hope the doc can help friday

[lolly47 in reply to John_Mills]

Hi, thank you for reply , I must sound a bit unclear with my dad ,but he is really clever at keeping things to himself. My sister said it started behind his eye, is that maybe possible.

[Mishy in reply to lolly47]

Hi there

I have Wegeners and it started initially in March 2009 with double vision due to swelling behind my left eye and before that, what I thought was sinus pain in the left side of my nose and cheek area. It took a while for a diagnosis and whilst they were trying to figure out what it was I was being seen at Moorfields and taking high dose steroids (Prednisolone). Luckily when a reducing dose of steroids didn't resolve things (I was in a lot of pain with the swelling and lost the vision in the left eye temporarily), I was referred to Prof Pusey's renal/vasculitis clinic at Hammersmith Hospital and within half an hour of talking to the doctors there they diagnosed WG. This was later confirmed on biopsy, as I must say I was a bit sceptical at this point and not that convinced of the diagnosis. I was given two infusions of Rituximab in August 2010 and, in combination with Myfenax and reducing Pred, I haven't had to take painkillers since about October 2010. I am still on Myfenax but have been reducing the steroids since then and happily last week stopped the steroids altogether. So far so good! I just thought you might find it useful to hear from somebody who started off in a similar way to your Dad! I've just joined this site as well and find it really helpful to hear that I'm not the only person in the world with these weird symptoms!

[lolly47 in reply to Mishy]

Hi , glad to hear for you that things are settling down, very strange that so many people have such similiar stories, my Dad is under the Royal Free with Dr Burns who has been great , Things for my Dad have taken different turn poor thing , they have put him on trial drug for suspected Parkinson now !!!!!!! Take care and always try to remain postive