Has anyone been diagnosed with Brain Vasculi... - Vasculitis UK

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Has anyone been diagnosed with Brain Vasculitis?

cruznlcsw
cruznlcsw
17 Replies

I would like to know what people are experiencing, and treatment options if any. I also have Sjogren's, a lesion in my kidney, and they have me on a heart monitor to see why I have a racing heart, difficulty breathing, and sometimes pain. Thanks for your help. I live in the USA, but I can't find a site like this.

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hof-man

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

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Suzym2u
Suzym2uModerator

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

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cruznlcsw
cruznlcsw
in reply to Suzym2u

I was told cerebral vasculitis. That's all I know. My neurologist doesn't want me to have a biopsy or angiogram due to the risk associated with it.. I have tested positive to P-ANCA for several years now, and I am having many problems with thinking, concentration, memory, exhaustion, and sleeping a lot. Also, it appears that I am having small TIA's. It used to get better, and I could continue to work, but have had to quit my job unfortunately. I was a psychotherapist/clinical social worker in health. Any information would be appreciated.

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Suzym2u
Suzym2uModerator
in reply to cruznlcsw

Maybe you could talk to John, this was discussed on Wednesday at the Hammersmith in London. There was case study of ANCA + (GPA) with similar symptoms to you plus migraines. John's email is John.mills@vasculitis.org.uk , he will be able to discuss this with you in much more detail than I can. All the best Susan

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kitty25

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

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bowler
bowler
in reply to kitty25

Hi

Do you know if there is a similarity with brain vasculitis and giant cell arteritis, which I have, I understand that GCA it's a form of vasculitis.

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cruznlcsw
cruznlcsw
in reply to bowler

I was wondering the same thing as you since I have facial pain, and also headaches, and I have pain over my large veins on the right side of my neck. If I get any information I will let you know.

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cruznlcsw
cruznlcsw
in reply to kitty25

Have you had difficulty thinking, concentration problems, memory problems, etc. I can't do too much now. I also have really bad days when I sleep a lot, which is not like me. I was always on the go, and worked. Not anymore. I was a psychotherapist/clinical social worker. I miss my patients.

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kitty25

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?

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cruznlcsw
cruznlcsw
in reply to kitty25

Hi Kitty, I am not on meds yet. Waiting to see my rheumatologist urgently. I have not been told what type. I am sleeping a lot when I am really bad off, have an altered state of conscience, thinking and concentration poor, memory affected greatly, balance problems, trimenigel neuralgia, incontinence of bowel and bladder, extremely exhausted. I also have a lesion in my kidney not associated with this, I am wearing a heart monitor right now due to racing heart, breathing difficulties, etc. By the way, I was married three years, and then had to raise my three children by myself. I went on to get a master's degree in social work, and then a license, but I got a late start due to having an autistic daughter, and I wanted to make sure she would be okay. I was almost 47 when I got my Master's. Tiffany is high functioning now. Thanks goodness! Tiff lives on her own now. She has worked part-time for the last 18 years at a job I got her. She also has poor health, such as RA and seizures, etc. but pushes onward just like you. Hang in there! Good talking to you.

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vivdunstan
vivdunstanAdministrator

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...

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cruznlcsw

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!

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Georgiana

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.

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Louzoejf29

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.

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cruznlcsw

Hi Liuzoe,

Yes it is helpful. I have had similar symptoms. Nice to not feel so alone! Also, I want to thank everyone for their input about medication. My doctor told me that methotrexate would be the best and have the least side effects. Again thanks a lot!!

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Atkins2014

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?

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missionary-in-EC

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?

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