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cerebral vasculitis

chowmein2
0 Recommendations

Hi. Does anyone out there have cerebral vasculitis? My doctor won't refine the name (ie: CNS) because he feels the biopsy/angiagram is too risky health-wise. I am being treated with aspirin and Niacin and it has helped alot. It is scary though. I'm 56 yr old. I've shown signs of dementia before and have memory problems and seizures which are now under good control. I do wonder what I might be able to expect in the future though. I want to be realistic. I was turned down for long term care twice and am heistant about trying with a higher-risk company but I think that is the only option. Has anyone out there dealt with this long-term care issue? All input is appreciated.
Thanks, chowmein2

Explore topics in this discussion:

Dementia Vasculitis Vertigo Niacin Chemotherapy Prednisolone Prednisone Epilepsy Stress Rebif Depakote CellCept Incontinence Aspirin Stroke Multiple sclerosis Physical therapy Seizures Azathioprine Weakness Pain Memory Depression Paralysis Temporal arteritis

27 replies

Thorn

Hi chowmein2,

My wife was diagnosed with cerebral vasculitis last year after a stroke to the back of her brain,we to are unsure of the actual name of her's as they have not performed a biopsy,but she has had Angiograms and also has MRI scans too,last year she fell very ill with some form of sepsis and ended up in Hospital for 4 months,half way through that time we where told that the Vasculitis had flaired up and that they where going to try an alternative treatment for the condition..she was previously on High dose Steroids, 70mg of prednisolone


The new treatment was a course of low dose Chemotherapy while she was in hospital,this was then combined with 7.5mg of prednisolone + 150mg of Azathioprine (immuno-surpressant) + Asprin + other meds daily
This (fingers crossed) seems to be working quiet well.My wife is only 41 & we live in the UK .

Not quiet the Long term care advice you where after sorry.

chowmein2

Thanks for the reply Thorn. I haven't looked here in a while because I didn't expect anyone out there to know about it first-hand. I'm sorry your wife is so ill. I am lucky I guess. I've had no strokes and am pretty stable on my meds. So far my MRIs have shown significant changes about once every four years. My memory is very bad but I can sort-of handle it. Been getting a few headaches but nothing serious. What is sepsis? Also is an angiogram when dye is put into the brain arteries and then scanned with a CT or MRI? Thanks,
Chowmein2

Thorn

My wife had been having very bad headaches off and on for years,these seem to have stopped now,but that might be due to the fact that she had a lumber puncture a few days before the stroke ( which left her in absolute agony ) they drained excess spinal fluid from the spine.. we can't prove anything but it does seem a bit of a coincidence that she ended up in hospital and started losing her sight on the same day.

Her long term memory is amazing,hell she remembers more stuff than me..she was/is a very brainy lady and before all this she was going to college to become a bio-medical scientist.
we're not sure what damage is caused by vasculitist and what has been caused by the stroke...she is partialy sighted,loss of the lower half of her vision..but her eye sight (and eyes) are perfect..if you know what i mean,her problem is in the brain.
she does have issues with her short term memory & she has changed personality wise (but i've put this down too depression & anger) her hand eye co-ordination i totaly shot,she has trouble reading,by that i mean she has trouble following the same line on a page :o(

sepsis (which i most likely spelt wrong lol) is blood poisoning,which they said was due to a low immune system from the steroids...can't win either way when your ill.

The angiogram my wife had was to check on a benign brain tumour she has,it indeed does involve a Dye being injected into your groin (quickest way to the brain) and then i think she just had a normal x-ray..but i wasn't in the room with her and she can't remember..she does remember that when the dye hits your brain it's cold lol ;o)

chowmein2

Thanks for your comments. Seems like no one has c. vasculitis or knows that they have it (probably more the later). Anyway, sorry your wife and you have had a time of it. I hope she is not disabled from the stroke. Yikes. It's good you are pursuing treatment. I''ve never been sorry I did despite my fatigue and hopelessness sometimes. Hang in there.
Chowmein2

mbaker

I have cerebral vasculitis. I had strong migraines for 3 years thinking they were related to my job (teacher). Had 2 TIA's, then about a month later had a major stroke. Was diagnosed with CVS after several inclusive blood tests, Mri's and Cat Scan. Was finally told of CVS after lumbar puncture confirmed diagnosis. Thank goodness puncture diagnosed CVS because brain biopsy was next test.
Spent 4 months in hospital learning to walk and develop some fine motor skills again. Do you have any questions about this. I was told by Dr's that not many people have this disease and i just happen to stumble across this site and typed CVS on a whim.

chowmein2

Dear mbaker: Finally I am answering. I stopped reading this site after reading all the awful things people with cerebral vasculitis are enduring. I'm awfully lucky so far. But now my short term memory is so bad and my fear is leaking out all over the place. I need to talk to others who mop their's up. I get headaches sometimes but I don't really think they are related to the inflammation. I do get strong but short-lasting head pain about once or twice a week. This also may be nothing. Did you see Away From Her? I wish I hadn't. Julie Christie played an allheimer's patient of about 50 years old. She had alot of courage but it was an ugly scene. This is a rare illness. I'm sorry you had a stroke and had to swallow major doses of patience and humility. Physical Therapy can be Purgatory. Take care. Chowmein 2

sharrieyfron

Hi MBaker,

I live in South Africa and am still waiting for an official diagnosis. I was misdiagnosed with M.S. for 3 and a half years and after taking the Rebif and Betaferon injections for awhile and the side effects being so horrific, I decided to go for a 3rd opinion and new brain mri & it shows that its not m.s. but more in keeping with cerebral vasculitis without autoimmune factors. Bloods came back clear but still waiting on 'qwacks' (dr's here!!) to get to some conclusion. Do you know apart from brain biopsies and chemo what else can be done for it, preferably natural.
There is also not support group here in SA.
Sharrieyfron

JayRo

Hi Everyone,
I've just gone on this site and have read all your e-mails. Is cerebral vasculitis the same or similiar to temporal arteritis? It's also known as giant cell arteritis. I was diagnosed with this over 2 months ago and I still can't get over how it's changed my life! I have a fantastic rheumatologist, but I now that my initial symptoms are under control, I seem to be experiencing alot of others like excruciating lower back spasms. I have been on large doses of Prednisone, which the Dr. says is partially responsible for some of my symptoms. Now that he is tapering me down on the Prednisone, I have so much pain throughout my entire body. I am getting really depressed about this, as the Dr. says this disease can go on for a couple of years! Any info anyone has out there is much appreciated!

chowmein2

Sharrieyfron: I am not surprised that you were diagnoised with MS. One doctor I had flirted with that idea too. In any event, cerebral vasculitis is hard to diagnoise. The gold-standard for diagnoisis is an angiogram and or/biopsy. One can also have a begnin form that can go away on it's own and is mostly not a big concern of the doctor's. I'm not sure if the biopsy determines that either. As a source of info, go to the website of the Cleveland Clinic in Cleveland, Ohio (US). They have a clinic dedicated to it and I have found it especially helpful for info and I've read alot of stuff. Also, you can educate yourself slowly by reading journals on it at the National Library of Medicine. Put in "PubMed" into your search engine. I put in keywords from my image reports and slowly got a picture of what I probably have and what is done or not done. As far as "natural treatments", I don't think most Western doctors would recommend it. It is a very serious illness. If it continues to progress unabated, it is usually fatal I think. But don't let that deter you from treatment, speaking for yourself and enjoying life as you can.
chowmein2

chowmein2

JayRo: I don't know much about Giant Cell artery inflammation. Mine is in the tiny arteries. Your med experience sounds awful. You might look up 'temporal arteritis'. It sounds cerebral since we have temporal lobes. There are a number of names for the same process. Look up journals on PubMed (Nat. Library of Medicine) and info on the Cleveland Clinic website. I've found them more helpful than talking to doctors. They've got to watch the clock and also don't want to be blunt most of the time from my experience. I drag it out of them if I need to and then read on my own. Hope things improve for you. Tune in again!
Chowmein2

sharrieyfron

Hi Chowmein2,
Thanks soo much for replying, I have felt totally unable to cope with all this. I will go on the sites you recommend. The Drs here haven't given me much info at all to go on and handling all this on my own is heavy. The headaches I've had over the years have been hectic and I just put it down to sinus, but now realise as they've progressed that they are not. My vision tends to get rather blurry and have had many t.i.a's but was told my the one neuro that they were 'psychological.', isnt that what they all say when they dont know what to do with one?!!!
Thanks so much once again and let me know if you can find out anything else. Stremgth my dear journey-partner!!
Sharrieyfron

chowmein2

Sharrieyfron: When you get a MRI report "suggesting" vasculitis (best you'll probably get from an MRI) or if you have a biopsy (best), make a copy of that report and carry it around with you. The emergency team will then assume you 'want to be sick' but can contact the imaging clinic and confirm that the report is real! I can't tell you the number of times I left an ER fuming, not knowing why I was having seizures or vertigo or something but certain it wasn't my idea. Besides even if the symptoms are psychological in origin, any doctor who treats you like you aren't sick needs to go back to medical school. Abuse, extreme stress, PTSD, etc. often result in physical reactions which we cannot talk ourselves out of. Will write more soon. Got a cold and got to hit the sack. Don't give up.

chowmein2

sharrieyfron

Hi Chowmein2,

Thanks so much for your input. The seizures have been going on for 3 and a half years and at times they settle down and of course when I get a flare up or very over stressed etc then I have one. Have had extreme stress and ptsd.

Get well soon! The weather here is soo hot, 19dc at night and up to 30 in the day - not good for the cerebral story. I get some feed back this Monday coming from the drs.

God Bless and get better see!!!
Sharrieyfron

sharrieyfron

Hi Chowmein2,

Hope youre feeling abit better and the flu is abating some. Spoke to the Dr on Monday re decision of chemo etc. He said that he had spoken to the neurologist and that they feel that they should just let things be for awhile. He said that if I get a flare up then it'll have to be treated but otherwise they will redo the mri in July to see if further scarring is happening.
My vasculitis is in the deep white matter of the brain, some more on the left than the right. How do they do brain biopsies with it being in the deep w matter? The dr's here are seriously under question lately with many people being misdiagnosed and its just too shocking for words.
Hope to hear from you as you get better.
Sharrieyfron

Flamingo1954

Hi all. I have just found this site and it is an answer to prayer.I was diagnosed with cerebral vasculitis in 1993.At that time there was no information about this disease at all. I had at least 7 strokes before they finally figured out what was wrong. I was told I had 6 months to live and I am still here and thriving 16 years later.

It is real comfort to me to find out I am not the only one in this leaky canoe. I have been on and off prednisone, done several rounds of chemo and am currently on immunosurpressants. Life can be a challenge at times, but I refuse to let this beat me.

I guess I qualify as a long term survivor. Take care all, and I hope to hear from you soon.
Flamingo

snuffle

Hi all,
Flamingo 1954, I just left you a note :) I wish we could merge this thread with Margaret Clarks's. Is anyone a computer wizard?
I have some news that may help to some of you. Since we are at the "clutching at straws stage", my neuro put me on seizure meds. I don't have Epilepsy or Migrains, nonetheless, the Depakote is helping immensely with the headaches.
I'm decreasing the prednisone. ( down to 10 mg/ day - yippee) , but am still on 150 mg/day of the CTX. I'm not sure this is a good thing. Without the high doses of pred, I feel old. Maybe I did before too, but it's been so long, who can remember. The important thing is the headaches are nearly gone. really didn't remember what it was like to be headache free for days at a time. Life is tolerable once again.

Chowmein2, if you haven't heard back from Margaret, mini strokes don't "feel" they leave deficits. These can be anything, depending on where they were. (Hearing, Vision, thinking, coordination, Speech, Swallowing, weakness etc.)

yockenthwaite

Chowmein: I have mini strokes all the time, though they aren't reported to the medics when they happen or investigated. They're just part and parcel of this chronic disease. The most common ones involve losing control of my limbs, particularly arms. Others can see me losing the ability to speak, or weakness in one side. When they happen I go and lie down and rest - best thing I can do to recover - until I feel better. But I don't make a big thing about this. I just get on with life.

Snuffle: glad you've made it down to 10mg steroids. I've been fighting to lower mine and have got to that level too. But my other drugs are still extremely high: Azathioprine/Imuran at 250mg, and Mycophenolate Mofetil/Cellcept at 2 grams a day. Both had to go up to help me lower the steroids. I'm doubtful I can go lower.

yockenthwaite

chowmein2

Dear Sherriefron: Thanks for your comforting thoughts. I don't even remember talking about the flu. I'm reading about several people here who have TIA's but don't go to the ER. At first I thought- OH NO because it could be more than a TIA, especially with classic stroke symptoms (paralysis, etc). But this lack-of and misdiagnosis of is driving me nuts. I have been with a psychatrist/surgeon for years due to my depression. He is the one who told me I have cerebral vasculitis after looking at the MRI films. Excuse me if I've already gone though this. I had gone to several neurologists and they wouldn't buy it or even the events I've had recently , which I'd bet alot of money on were TIA's. When I go to the ER and they see I've had depression, they close the curtain behind them and tell me to get dressed and sign out. I refuse to be humilitated anymore but at the risk of a stroke? I am really angry. I hooked up with another neurologist again now and he agreed that I could miss essential treatment in the ER due to the psych history. SO, THEN WHAT DO WE DO? I am going through all his tests but am not confident that he will be able to find something organic wrong with my brain. Since he is on the stroke team at a good hospital near here, maybe I should just lay low if he comes up with nothing. Maybe just because he is not near the finish line doesn't mean he couldn't be helpful if I have stroke!

Thanks for listening. I'm praying if I get a stroke that it is a blockbuster and a red one rather than an ischemic one.

Chowmein2

yockenthwaite

If I went to Casualty everytime I had a TIA I'd be there many times a week. Doing that's not going to help me in any way. However both myself and my husband are on guard for more serious strokes and we'd have no qualms about going to the Hospital if they happened. My disease is too aggressive to mess about in that case, but I also know that milder incidents of brain damage aren't going to be helped one bit by going to hospital. It's all part and parcel of having an aggressive cerebral vasculitis.

Good luck Chowmein2 with getting a proper diagnosis. I had to battle to get a proper diagnosis 12 years ago. I know how hard the process can be.

chowmein2

Dear Yockenthwaite: Thanks for your note. It helps me to remember I'm not crazy. Please tell me what your TIA's are like. The neurologist I'm seeing says that patients with C.V. are staggering, with half of their face drooping, etc. Otherwise, they wouldn't have it!

Also, what other symptoms do you have on a regular basis, especially since you say your's is aggressive.
Thanks,
Chowmein2

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