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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

gt4990

my daughter(now 8) had a acute attack in NOv 04. She has an inflamtory disease. She was not biopsed a sit would not have changed treatment. Her symtoms were severe, altered mental state(visual hallcinations) FULL pupill dialation, slurred speech, unalbe to sit upright(pain and dizzness) she was like htis for almost 32 hrs before meds startted to help. She is medicaly comprimised so it limits medical iontervention shtat can be used. SHe was treated with high doses ofsteriods which she was already taking for 'flares'

yockenthwaite

My consultant is a rheumatologist / vascular specialist. I'm very grateful to him because he diagnosed this life-threatening condition. I fear that if I'd been referred to a neurologist they might not have worked out what was going on, or could have misdiagnosed MS, causing me to die without proper treatment for vasculitis.

Flamingo1954

Hey all! Sorry have not checked in for a while. I still have a mentally challenged son at home, and things can get a bit hectic at times. I am still doing very well. The Cellcept seems to be doing the trick and my numbers are staying down toward the normal range. Of course they are still high and anyone seeing them without knowing my history would be alarmed- but for me they are great.
I have been reading all your notes, and I don't see any mention of a rheumatologist. I see both a rheumatologist and a neurologist. In my opinion, my rheumatologist is the one who has saved my life. The neurologists either want to tell me it is all in my head ( ya think!!) or want to use me as a lab rat. My rheumatologist is the one who listens and we work together to keep me going. I started to see the rheumatologist right after I was diagnosed, because this is an autoimmune disease.
Hope this might help someone. Take care and don't let the ----------( fill in your own expletive) win.
Flamingo

chowmein2

Dear Yockenthwaite: Can't find your last message but read it- you're 36, etc. Thanks. May God be with you.
Chowmein2

yockenthwaite

I'm 36. The illness struck when I was 22, and I've been using a stick for the last 14 years or so. Just one of those things. No point moaning about it.

chowmein2

Dear Yockenthwaite: Thanks for repeating yourself. I hadn't even thought of looking back at postings. My memory is so bad and I have felt worse lately. I thought I'd have more control over any new events (TIA's and strokes) than I apparently do. I bought a hiker's GPS system to be found (since cell phones are not tied to locations here), carry my cell too, have vital health info (drug list, living will, letter authorizing tPA shot, etc) around my neck at all times!

You sound like you are going through hell. Do you mind if I ask how old you are? I am not ready for sticks, etc.

Thanks,
Chowmein2

yockenthwaite

Dear chowmein2,

I told you what my TIAs are like a couple of posts ago. They involve me losing control of my limbs (particularly on the right side), falling over (ditto), or losing the ability to speak. If I go to lie down I feel better after a few hours and the brain function is largely restored. If they were a more serious stroke I wouldn't.

My general symptoms are very similar to multiple sclerosis. Main problems are mobility (I always use at least 1 stick, often 2, sometimes my wheelchair), bladder incontinence, memory/cognitive problems, fatigue, and losing control of my arms and legs. However I also have problems with vision, hearing, speech, falling over, headaches (though not until a few years ago), sleeping for up to 17 hours day after day, etc. All this is despite being permanently (since 1998) on very high chemo/cytotoxic immunosuppression drugs to slow down the disease progression. My drug doses have had to go up over time to control things and I've had to start new immunosuppressions. My disease is very much fighting back. I suspect I'd be dead if I hadn't been on these drugs so they are literally life-saving.

yockenthwaite

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

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 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

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

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.)

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

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

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

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 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

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

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

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!

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