I live in the UK and was diagnosed with cerebral vasculitis 10 years ago after suffering from violent headaches, mini strokes and intense pain in my toes and fingers . I had a lumbar puncture and MRI scans to confirm the diagnosis.and was treated with Chemotherapy, steroids, and medication to lower my immune system. It also affected my blood pressure so I take 3 types of tablets to keep it in check. I had to leave work and am now retired. My short term memory is awful My specialist has recently taken me off my medication for the condition as my blood count was too low and I was picking up infections. I am quite worried at the moment. I have had headaches and disturbed vision this week seeing semi-circles and zig-zags which I have not had for about 5 years. If there is anyone with this condition , I would like to hear from you and your experiences with the illness. As it is so rare I feel quite isolated at times.and a bit of mutual support from any fellow sufferers would be great !!
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cerebral vasculitis
- By Margaret_Clark
- Posted August 26, 2007 at 7:21 pm · 45 replies
- In How my disease has changed my life
- Shared with the public
Explore topics in this discussion:
Asperger's syndrome Meningitis Anxiety Menopause Stress Dyslexia CellCept Stroke Multiple sclerosis Agnosia Diabetes Cytoxan Weakness Cancer Eclampsia Imuran Dementia Vasculitis Verapamil Pneumonia Chemotherapy Prednisone Arthritis Aspirin Confusion Incontinence Mycophenolate mofetil Sweating Seizures Autism Azathioprine Pain Pacemaker Memory Depression
45 replies
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- By snuffle
- Posted September 12, 2009 at 12:55 pm
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Margaret,
Iy's been a long time since we talked. I'm sorry to hear that your symptoms are back.
About 2 months ago, my doc reduced my cytoxan because all of my counts were so low. All of the original symptoms came
cdreeping back, so slowly, that at first I didn't recognize that it was happening. When I went back for a checkup and mentioned it to him, he raised the CTX again. It was almost miraculous how quickly the symptoms went away again. I go back on the 19th for a blood test, and I'll let you know how it goes. If I wind up on transfusions, that's OK, as long as I can think, and my head ddoesn't hurt.
Tou may want to explore this with your doc.
Cheryl
- By tsham
- Posted September 12, 2009 at 2:02 am
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Wow!! I can tell from your post that You are an amazing person!! God bless you for cheering me up and making me feel better about my condition, I was diagnosed with cerebral vasculitis 3 months ago and can relate to most of what you have written, so thank you so so much!!You definetely ARE 1 in 2 million!!Stay Blessed!!
- By Flamingo1954
- Posted July 9, 2009 at 2:57 pm
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Hi Lucille! Great to hear from you. I agree with you that at least half this battle is attitude. I am a stubborn ol' broad and refuse to give up. I am still alive and I have things to do and people to love, fun to have and lots of laughs left to use . Yes, you do need to make adjustments. I make whatever modifications that I can to allow me to function as normally as possible. For example, my legs no longer work right. I can't stand or walk for very long, so I got a stool for my kitchen and I sit to do dishes and cook and bake. I still feed my family, entertain guests, and keep he place clean- I just do it on my tushy instead of on my feet.
The hardest part for me was saying NO and taking the time to rest and sticking to it. Most friends and family get it. The one's that don't are not really that important and I really don't care. It is my life and I will live it my way as fully and joyfully as I can.
That is my other weapon against this.... I laugh at it and myself. Who am I kidding? None of us are going to get out of this world alive anyway, so I might as well have a good time.
Take care of yourself and write soon,
Flamingo
- By llewcock
- Posted July 8, 2009 at 10:11 pm
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Hi everyone:
I am so new to this. I need to get on to this and then I will be fine. I've had cerebral vasculitis since 1998 and was on medication for 3 years. Since then I went back to school, worked for 4 years and then in February of 2009 I became violently ill (vomiting) passed out and my daugther called 911. Eventually in the right hands and in a different hospital I was told that the Cerebral Vasculitis was back again. I would go an 6 months of chemotheraphy and steriods, not able to work, drive and do anything else. Now I am 51 and trying to behave so I can go back to work. I know that I need to make a lot of adjustments in my life and make myself rest, which is very hard.
Lucille
- By llewcock
- Posted July 8, 2009 at 10:01 pm
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Hi Flamingo:
I also got cerebral vasculitis just before my 39th birthday. Was on meds for 3 years. Now just after my 51st birthday I had another stroke ---Cerebral vasculitis back again. Staying upbeat is to win this battle.
Lucille
- By yockenthwaite
- Posted June 28, 2009 at 1:42 pm
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Yes my cerebral vasculitis is in my small blood vessels too, which is good news for major stroke risk, and something I take comfort from. On the downside it seems to make it harder to control, at least for people with ongoing active inflammation. That's why I'm still on a very aggressive cocktail of cytotoxic immunosuppressants and steroids 12 years after diagnosis. If the vasculitis is in the medium or larger vessels of the brain it seems - according to the medical papers I've read - easier to treat.
- By chowmein2
- Posted June 28, 2009 at 2:05 am
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Hi everyone (sorry I can't remember names very well), but I'm confused too over my email. I got alerts that several people sent emails to me but I can't find them. Will keep looking.
I hope all of you are feeling a little better. I know 'better' is a relative word. I had a CT angiogram a few weeks ago and it seems my larger brain arteries are ok. I know the trouble is with the small ones though. But the doc said at least that the chance for a massive stroke was low and that I would probably just have continued TIA's and get demented slowly (the last were my words!). That is alot better from my point of view than having a major stroke. The word 'relative' fits here. Well, I'm going to go back to working on my quilt and drinking tea. I'm very good at escaping the ugly stuff! Hope you all can escape enough too!
Chowmein2
- By missanthropic
- Posted June 24, 2009 at 1:22 am
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HI Cathy,
Ive done testing for immune diseases and inherited immune stuff when they checked my hep c prior to considering treatment. As I have type 1a its unlikely to work so they didnt treat it as I should be fine for a good 20 - 30 years, well unless im one of the unlucky percentage who get somethign like myeloma and vasculitis, which is the path we are going down atm.
Its just unfortunate that all the stupid diseases I have had are all able to cross the blood brain barrier, though its rare. Im only out of hospital for the day, back in tomorrow for a cat scan and a few other things which i dont want to think about. I have 2 disabled kids at home, a bipolar daughter 21 and an autistic son 3, and already my mum is saying she cant drive them everywhere, and I'm not allowed to drive in case I black out and kill someone.
Loosing my independance is really a cruel blow. Getting home in a cab last night cost me 40 dollars. Even with free healthcare in Australia, this is costing me some serious money already. My daughter can't drive so its a tough situation. My son has special school and has to go to kindy etc. for socialisation skills.
I cant ignore it and I didnt realise getting assistance would be so difficult. In the midst of this im moving house and dealing at the dept of housing who have a house but its not ready yet.... so im kinda packed and kidna not and have people wanting to move into my house im in now.
It such a silly situation. I just want to scream.
cheers
jess
- By SickOfBeingSick
- Posted June 24, 2009 at 12:19 am
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Hi missanthropic,
Been reading peoples' accounts of neurological and headache stuff here because that's what I'm struggling with at the moment.
Was struck by your account of infections and swollen glands, though. I have a Primary Immune Deficiency that was only officially diagnosed a few years ago. I say "officially" because I have suspected it since I was 12, known for a fact since I was 19 and I am now 48! Doctors just wouldn't listen and blew me off for years and years.
These disorders are unusual, but not extremely rare, however most doctors never test or look for them and learn next to nothing about them in medical school. Shortly after I was diagnosed, I saw a cardiologist who read my health history and told me, "You couldn't have that or you would be dead right now". Hmm. . . , I thought. You must be talking to a ghost, then.
There is a very simple screening test for the most common Primary Immune Disorders, where they do a blood test for immunoglobulin levels. It is not very expensive. If your doctor won't do the test, an immunologist will.
Treatment for most of the Primary Immune Disorders is very effective and will prevent further brain and organ damage.
Cathy
- By missanthropic
- Posted June 23, 2009 at 11:48 pm
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Hi Everyone,
I joined the site because Im being investigated for CV at the moment. I have had the most bizzarre history of illness which includes maleria, toxoplasmosis, viral meningitis and hep c. The legacy has been 10 years of migraines which were non responsive to almost everything they threw at me. No BP, heart, renal problems etc. Recently I have started to have vision problems that come and go and I blacked out four times in a week, twice while sitting. Aches and pains in my joints and Im only 44. I also have a platlet dysfunction greater than 300secs.
Doing all the things youve mentioned and they have ruled out almost everythign else.
The pain drives me nuts, I dont think I have had a minute without a headache for the past two months. I have rash on my scalp and down my backbone, which is lil red dots. The glands on the back of my head and behind my ears stick out and are painful constantly.
Im so over being sick, so tired of being tired.
- By Himi
- Posted June 23, 2009 at 11:21 pm
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Hi, I'm new here. Just wanted to say Hello there's another one of us out there. I was Dx with GACNS in 2/2009. It's nice to find other people who understand the experience, my family gets the "glazed over" look too. I can't write that much because I've been having more issues with cognitive and confusion problems lately. Good luck, hope to chat more soon
- By yockenthwaite
- Posted June 8, 2009 at 5:41 pm
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Forgot to say that I do know of people who've gone into permanent remission with this disease, even to the extent of getting off all the drugs. There's always the chance that it could return, but they've done well in terms of treatment. But we seem to have a harder path.
- By yockenthwaite
- Posted June 8, 2009 at 6:35 am
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Hi Flamingo,
I've been on Cellcept since 2006, as well as Imuran since 1998. I've also tried Neoral/Ciclosporine as well. Cellcept is wonderful, and helps me greatly, but I need very high doses of both that and Imuran, and struggle to lower the steroids much at all. My CRP is never good now - always very high - but the better guide to my flares/relapses is the PV (Plasma Viscosity) which also gets checked every month. Mind you by the time the doctors notice that's high I already know there's a problem from symptoms! I get very bad nausea from both the Imuran and Cellcept (used to be from 9am-5pm, every day) but now the doctors prescribe anti-nausea drugs that I take twice daily and I'm much happier on these drugs.
But we're now looking at possibly going to Cytoxan/Cyclophosphamide if things go haywire again. Both my Cellcept and Imuran daily doses are so high that they can't be raised any higher. Very few treatment options left. And my cerebral vasculitis is still not behaving itself. It was pretty stable from 2000-2004 but has been fighting back ever since then.
yockenthwaite
- By Flamingo1954
- Posted June 7, 2009 at 11:00 pm
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Thanks for answering. Wow, It is so amazing that I am actually talking with others in the same canoe. This is so cool!!!! I understand about not always being chatty, but the fact that you are out there somewhere is still a big comfort.
To Yockenthwaite, I am not sure there is a remission, just the time between flares. Have your Dr's considered CelCept? It is an immunosurpressent also. I was on Immuran for years and kept having flares and the sed rate and c reactive protein numbers were not ever very good. I have been on the celcept for about a year and a half and the numbers are great. I am feeling much better too. I also do battle with the huge weight gain from the years of prednisone. I don't have trouble with cholesterol, but now I have trouble with my knees and back from arthritis due to my weight. Oh well, still being alive is worth the aches and pains.
Take care and write soon. Flamingo
- By yockenthwaite
- Posted June 7, 2009 at 3:07 pm
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Welcome Flamingo. I've had cerebral vasculitis since 1994 aged 22, though only diagnosed in late 1997. Has been a difficult path because mine is very resistant to treatment, so no proper remission yet and still fighting. But still here which is good, and try to stay positive.
- By snuffle
- Posted June 7, 2009 at 12:47 pm
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Hi Flamingo,
Welcome. I'mglad that you found us. We're not a particularly chatty bunch, with our ups and downs,but someone always answers, and we all always understand.
Cheryl
- By Flamingo1954
- Posted June 6, 2009 at 10:24 pm
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Hello all. I too have cerebral vasculitis. I was diagnosed in 1993 after 7 strokes. Back then, I could find very little information on the disease. I just found this site, and it is an answer to prayer. It is comforting to know that I am not the only living person with this. I look forward to talking with others who will immediately understand our vastly changed lives. I have lived with this for 16 years now, and have undergone several different treatments. I got ill when I was 38. I am 54 now and still going strong. Of course, I have had to make lots of changes and adaptions- but it has been well worth it.
I am looking forward to hearing from you all and becoming a part of he group.
Stay well and never let IT win.
Flamingo
- By chowmein2
- Posted June 6, 2009 at 12:08 am
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Margaret Clark: Please tell me what your mini strokes were like.
Also has anyone had a CT angiogram? I had one the other day and felt like I was going to explode on the table. Never experienced anything like it. Luckly before I did explode or die or something, the tech came in and maybe a finger was lifted from a button or something. Suddenly I was ok.
Please write.
Chowmein2
- By alewcock
- Posted June 2, 2009 at 4:30 pm
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snuffle: i can wait a few extra months to leave home. its no big deal. id rather be here for her, than away worrying.
- By chowmein2
- Posted May 28, 2009 at 1:21 am
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Hi everybody. You probably thought I was dead. Well, when I am I will no longer write!! Ha Ha. Black humor is my major emotional coping mechanism sometimes.
Anyway, I have been down though, mood-wise. I thought I would be able to rise above that from now on but it's probably part of maybe seeing death coming or the beginning of a long, slipperly slide. As I said before, I had 2 TIA's in the last two months. I get headaches alot now and nearly passed-out last week at a friend's house. I know I am going in the wrong direction. I am carrying a hiker's GPS system, cell phone, list of meds and my health directive at all times. It feels a bit insane but my doc said it was responsible. If I have a stroke, etc. I want to be found asap and get the best treatment. I live alone. I want to stay living independently as long as possible. My doc says my nieces (who I somewhat raised after my sister died), think I am 'over the top' on the preparations because they are in denial over the fact that I am getting older and they will lose me eventually like they lost their mom. I don't know. Personally, I'd prefer to get a big red stroke and die on the spot rather than go to rehab, etc. But that is often not what happens. I'd like some feedback on what I've said if you have any.
Thanks,
Chowmein2
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