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cerebral vasculitis

Margaret_Clark
0 Recommendations

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 !!

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

barbwoldin

I believe "seeing semi-circles and zig-zags" has to do with blood pressure--too high I think. My significant other has a pacemaker and since his heart problem has had some blood pressure problems. His doctor said the vision problems like you describe are due to his blood pressure. Hope this helps., Talk to your doctor about it to find out for sure.

Barbara

chowmein2

Dear Margaret: Do you mind if I ask how old you are? I'm 57. My vision is not great but the eye doc says "it's age". Since I know my past seizures played havoc with my vision, I'm not convinced. But it's the stroke risk that concerns me the most. My doctor (treating the vasculitis) thinks I've had mini-strokes in the past. I do have a history of headaches and now get a short sharp pain in my head somewhat regulary. My fingers/hands have been numb and are killing me at night. I see a neurologist about it next week. Present family doc believes it's mechanical- due to pinching of the nerve bundle at shoulder (I'm also a bit overweight). Oh well. Thank you for writing. I'd like to talk to someone else who has this sometimes. Re memory... well mine is pretty bad. Neuro-psych tests showed I had concentration problems really. I had trouble getting the info in my head. Once it was there it was ok (a long-term memory now?) Anyway, I try to cover-up for my memory but it doesn't work very well anymore. I saw "Away from Her" the other night because I like Julie Christie so. But it's not a movie we should see. It is for people who are well and need to be educated about dementia. We can already tell our own stories.

Good luck. You're in my prayers.
Chowmein2

BooBoo

I live in the UK also and have suffered from cerebral vasculitis for about 2 years but was only diagnosed 11 months ago. i had always been fit and healthy all my life then i had a car accident and a few days after the accident lost 85% of the sight in my left eye thankfully it has since almost fully returned however soon after that i started to get strange sensations in my legs like water was being trickled down them. I also noticed that any pressure on my skin would leave a perfect imprint of what had pressed against it this would last for several hours sometimes. Embarassing! I then started with a cold hours later a chest infection . 2 days later Pleurisy hours later pneumonia. I was always a slim build but i was now losing weight and in turn looking very poorly. i was also suffering crushing headaches. Then i apparently collasped at work one day. I say apparently because although i stayed conscious i had no recollection of being taken ill. by the time i had arrived home some 40 minutes later i could not tell my sons why i was home early this they thought strange and they rang my parents. After being with my family for a couple of hours it became evident to them that i no longer had any short term memory and could not tell them what i had done , said or even eaten as little as 20 minutes before. From this day i started making notes about everything . Now my memories since May 2006 only exist on pages of a notebook or in a voice recorder. Thankfully i still have long term memories prior to this time but nothing since. Ironic really as 2006 was the year i turned 40. The saying goes "life begins at 40" ha-ha in memory terms my life ended. I was later to find out this incident was a stroke caused by the cerebral vasculitis, one of several strokes infact. Thank fully i am still here and grateful so i manage to stay upbeat something my friends and collegues tell me i do well. I believe between me and the condition it hides itself pretty well. And there lies the frustration because unless anyone has suffered memory loss or chronic fatigue both unseen problems one cannot start to understand how much work, effort and energy is needed just to complete simple tasks. Tasks before my illness i could have achived 5 at once only using my little finger if you catch my drift. Now i cannot even complete one task on a bad day. FRUSTRATION!!!!!!!!!!!!!!!!!!! It was also hard to start with when i was first ill because i was convinced i was going mad.Thank heaven for my GP who had known the normal me. Then there was the endless tests again according to my diary. Finally a jig saw picture no one could put together, until all the pieces were there.Finally a diagnosis.......................then frustration again a condition no one has heard of let alone understands. So i believe i have searched read and studied to get a better understanding. Any further information is always greatly appreciated.To anyone with Cerebral Vasculitis take pride in having a rare condition I believe the stats for European countries are1-2 per million. so tell yourself "i am one in a million- thats official" and Good Luck!

adirondackgirl

I live in the U.S. and I am working my way to a diagnosis. I have had alot of testing done. Most recently an LP that frankly was the worst thing in the world and had to have a blood patch following. This has been a 3 year process. I now will be having a muscle biopsy on 10/12/07 and depending on those results, we move on to the brain biopsy. I have had the vision problems you describe as well over the course. I too feel so isolated from everyone and everything. Noone can understand unless they have been there. My finances are in ruin and I have just applied for disability. This has taken such a toll on my family. The guilt I feel is tremendous. I just want some kind of treatment but I don't know what to expect from that either. Ugh!!! I am done whining. Please let me know how you are doing with this. Thanks!

chowmein2

Adirondackgirl: Hang in any way you can. I will pray for you. I'm glad I never gave up. Disability is ok.
Chowmein2

chowmein2

Hi. I have Cerebral Vasculitis as best as anyone can figure out without a biopsy or angiogram (spell?). The image shows what looks like croutons in my brain. I haven't had any strokes or TIA's luckly. I'm 57 yrs. I have had Major Depression most of my life and finally had ECT (shock therapy) because I was resistant to the antidepressants (side-effect of CNS). Anyway, during ECT I began to have seizures outside of treatment. This was due to the CNS. I never knew I had run away with the circus. My work history, sex life, education and most everything has been a circus. However at least now I know what is going on with me. My short-term memory is getting worse and worse and I can't balance my checkbook. I've been in the psych unit for depression but at least you get released from there. People don't get released from dementia units I don't think. Tell me if you know otherwise.
Chowmein

Girlie

Hi All
I just happened upon this website but would like to add to the discussion.
I live in the UK & suffered a Cerebral Vasculitis when I was 23 years old. I have a bad memory, suffer with a left sided weekness am on medication etc, etc. I feel like the person I was before it happened has died as I now feel completly different which sometimes still makes me upset. If there are any questions/support you would like just ask.

Margaret_Clark

Hello sorry have not replied before, how is your health now? I have had problems with my computer but it is ok now. I am 62 years of age but sometimes feel a lot older though try to keep positive. My family keeps me going.
I think illness certainly changes the way you feel about life and I just live from day to day, although at the moment I am not too bad. I look forward to hearing from you.
regards
Margaret

Margaret_Clark

Hello did you receive my previous message - I am sorry to have not replied to you before as my computer has been playing up. I would like to know how you are now.
and thank you for your encouragement which means a lot. My memory is still very bad and unless someone has this illlness, they do not understand the everyday frustrations we have trying to remember things. I hope you will get back to me
regards
Maregaret

Girlie

Hi Margaret, I hope you are well.
I am now 27 years old & am not too bad physical but mentally is a different story. I suffer with depression & anxiety which I had before the Cerebral Vasculitis but it is now worse & have just been told by the doctors at the moment due to the medication i'm on I cannot/should not get pregnant.
As I was very young when the illness happened they don't even know if they will eventually take me off the medication.
Anyway, chin up as they say. Hope to hear back from you.

yockenthwaite

I'm in the UK and was diagnosed with cerebral vasculitis in 1997, though I'd been ill since 1994, aged 22. Was fairly stable for a number of years but relapsed hugely in 2004 and we've struggled since then. Now on Mycophenolate Mofetil, Azathioprine, and steroids - high doses. My case is similar to multiple sclerosis in terms of symptoms. Main problems are mobility, 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 15 hours day after day, etc. Am getting worse as the years go on. Haven't been able to work with this, and I too was told not to become pregnant while on the drugs. Can't have children as a result because there's no prospect I'll be off the meds, and I keep going to a more toxic cocktail. Nausea was a huge problem with the drugs in the early years, lasting from 9 in the morning until 5 in the evening. More recently though I've been offered anti-nausea drugs, taken twice daily, which make life more comfortable.

yockenthwaite

Catching up with my old posts. There's a CNS=cerebral vasculitis foundation based in America. They have an online email list which may be helpful (I don't find it too focused unfortunately, unlike their old bulletin board). But if interested see http://www.cnsvfinc.org/ In the meantime I'm happy to exchange info here about meds, symptoms etc. With a literally 1 in a million diagnosis it's a big emotional help to make contact with other people who have the same diagnosis.

babybugs

dear margaret, I was just diagnosed in july 07, after suffering chronic migraine since I was 13. I am now 48. Since my treatment I have had no headaches which is brilliant as I was unable to travel shop etc and spent at least 3 days in bed every week struggling with two sons a job and no family. My husband worked long hours and my father went to live in england after my mother died when I was 29. I nursed her for 3 years. I have just one brother who lives in luxembourg and cannot cope or discuss my illness which is hard to cope with. I also looked after 3 handicapped cousins as there was no one else. Needless to say all this pressure came to a head. I suffered severe depression and all my headaches were put down to mental illness. I felt like I had won the lottery when I was given a name for my illness but this only happened after 3 mths of being sick having pains in my shoulders and losing 3 stone and blinding headaches finally after being sent home from hours in a.e. twice, I lost the power in my legs , I was paralized. I had been brought in for a kidney biop. as all my organs were fighting against each other, luckily a young doc said she thought it was my brain , I said thank god as I have always said these headaches are not normal ,nothing takes them away, please get me transferred to the royal hosp in belfast. After 5 wks of hundreds of tests they said it was cerebral vasculitus and it was lifethreatening and they would have to hit it hard and fast. I was put on 12 steriods a day and cyclophosamide, chemo, two times a day , I was in hosp for 4 months unable to walk, they said I might not walk again, however just over a year now I am walking with one crutch, have no depression or migraines , just a headache in the mornings on wakening but it goes once I get up. I am down to 4 steriods and chemo once every other day. My brain scan says the inflamation has gone out of my eyes spine and brain stem but the brain still has the spots prob as I have had it so long. I got a car two wks ago and I am now mobile again which is great for my independance and my husband as he has spent all year taking me to all my appointments. I would just like to say ,do not take on board all the docs tell you as they know so little our illness is so rare. They told me my hair would fall out , I would not walk again , I would be in and out of hospital with infections as the chemo means I have no immunity all of which has not happened. I am, so happy for my family who did xmas dinner for me for the first time as a treat, as my son met a lovley girl last xmas who is a great cook and they said they wanted to do it for me , it was wonderful especially that I have got through this year. My only problems are very sore cold legs and I have put on alot of weight with the steriods which is hard as I was always so thin. I would love to know has anyone managed to come off the steriods without the paralizis coming back and symtoms, as I do not seem to be able to get any lower without feeling ill. I have to go back to neurology in 4 mths. Even though I have this illness I am just glad to be alive and have found stress and upset affect my illness so I have weeded out friends who pull me down or have never been there for me as I always was for them . My husband told me they told him when I was in hospital I only had two wks to live , it is not that you become hard but you just have to learn to be selfish and put yourself and your family first as they are your only true friends. Please stay positive I have only given you all this detail to hopefully see that life can go on. All the best for now Dawnx

snuffle

Hi all
We had a great discussion going for a while, but I guess we all got busy at the holidays. Reading your posts has kept me going for the past several months. I know I'm really bad at adding to discussions. I just can't get used to the idea that someone may want to hear what's happening with me. I don't know if the rest of you ever feel this way, but no one ever listens long enough to get a grasp. So. I just don't talk about it at all, not even to family. It's as though they don't know anything about cns vasculitis, (I have the GACNS type) and aren't interested in learning. I wonder if people with cancer and other well known diseases ever feel this way.
The thing that I hate most about it is that it's so unpredictable. That whole "waxing and waning" thing. For several dys, I'll be sure that 'm getting better, then, not so much. 'll have anothe TIA, my vision or hearing will go, or my legs will give out. It's frustrating for my family and me. Two years of this and no end in sight. I don't really blame them, I'm sick of it too. I spend most of my time and energy pretending that nothing's wrong with me, and that I'll be returning to work any day now. Doc says 'm still in denial. Maybe pigheadedness will see me through.

I'm sorry for the rant, usually more upbeat. I wanted to reply to Margaret about the circles and zig-zags. These kind of visual disturbances were some of my first symptoms. Unfortuntely, they can also be due to low platelets, high LD , and other blood abnormalities, so if it's been a whle since you've had your bloodwork done, you may want to do that. I totally agree with your comment on needing the support, and promise 'l do better at adding to discusions. I'm not rally sure how to start one.

babybugs

You have hit the nail on the head, that is the main problem we put on a brave face for people because THEY cannot cope. It is so easy to say , god I would love to stay in bed today, but I push myself to always get up. I feel the same as you about posting my details, as who would want to know , as this is what we have experienced , but I love to read other peoples , so I have put my shyness to the side .PLEASE keep me updated, it helps to know I am not the only one and some of the symtoms seem different with each other. One of my main problems is I sweat at odd times like a river especially my face and neck. Not s ure if this is the illness or the diabetes that I have developed due to the steriods plus family history. Keep well, look forward to hearing from you. I am keeping well at the min, have roast lamb cooking for new years day so I must be ok! love dawnx

snuffle

babybugs,
I can totally identify with the "sweating a river". This is recent for me. I have always been one of those people who are always cold. I went through menopause years ago, and the sweats were never like this. I asked my doc if my current medication had made me so much better that was going to go through mp again.:)
I'm glad your keeping well. Thanks for replying to my rant. Keep in touch.

Margaret_Clark

Dear All

Thanks for all your support. There is no-one who I can talk to about my illness and yes I get up in a morning feeling ill, in pain, tired usually with a headache and it takes me until mid-day to come round. I have weakness in my hands and keep dropping things and have very poor fine motor skills. My memory is getting worse and I lose everything but inspite of this I feel very lucky to be able to get about, as I could have been very seriously disabled.
I take 3 lots of blood pressure tablets, - full doses of each and still struggle to keep it in check. I have always had this problem and when I had my children I was in hospital for weeks before they were born - with pre-eclampsia. came off steroids about 2 years ago and was then on azathrioprine - which I have now been taken off. I will be having a full blood test in February and blood pressure check. I wish you all a Happy New Year and appreciate the discussions and support given to me. My two lovely Grandsons - Tyler
who is 8 years and has Asperger's Syndrome and is
a bit of a handful and Morgan who is 5 years and may be dyslexic keep me going, so I tend to worry more about them than myself!! Very Best Wishes to you All

snuffle

Margaret,
I'm sory that yur symptoms are stil ongoing, and getting worse. Are you off the Azathioprine because of the low blood counts?
It sounds like you are not in remission, and need to go back on one or both of the big guns. (aza and steroids)
You said in your post that you were diagnosed with this 10 years ago. Has it ever gotten better during that time? Have you been in remission and relapsed, or ben in active disease the whole time?
I ask because I was diagnosed about 2 years ago, and have never been in remission. After they decided to add cytoxic drugs to the pred, I started with Aza, which only -only made me violently ill. Then we tried CTX. i saw improvement, but reached max dose and had to switch again. Then the MTX, and- again with the allergic rx. I'm now back on CTX, at my insistance. Some things ae worse than the possobility of future cancer or lymphoma.
I'm too long-winded. Good luck with your upcoming blood work. Hope it's in early Feb.
If you ever want to talk about your grandkids, i'm here. I used to teach special ed when I was living a useful existance. I've worked with several chldren with autism spectrum disorders, and I'm a certified Herman instructor.
Cheryl

Margaret_Clark

Hi The major problem at the moment is to try to keep my blood pressure levels down When I started with CNSV My blood pressure was 195/120 so this is certainlyconnected with the illness. I am supposed to be in remission now as I don't see my Specialist only my local doctors. If I have a flare up they will refer me back to him. Recent blood pressure reading was 200/118 but this has reduced due to increasing my tablets. Touch wood I have not had any symptoms otherwise to indicate a flare up. I take 3 lots of BP tablets. aspirin, statins, and a stomach tablet.
My eldest grandson is very bright doing well at school
but is difficult to deal with as he loses his temper
and is always hitting his brother. I was looking after them last week and he punched him in the face busting his nose for no reason!! I worry more about Morgan as he is not learning anything at school cannot read the simplest letters or words. He has a bad lisp and toe walks all the time. He has run away in the past - to school on his own one day. He is way behind the other children although he is the youngest in the class. Thanks for your reply if you are able to give me any advice regarding the boys I would be grateful
Regards
Margaret

yockenthwaite

Sorry to hear about the blood pressure problems Margaret: that can't help with this disease. My blood pressure shot up when I was put on Ciclosporin A, but otherwise it's been ok. I'm lucky. My cholesterol level is a concern though, due to the steroid weight gain and some of the drugs I'm on. I'm due to start on statins sometime, when we've finished fiddling with the immunosuppression drugs for a while anyway.

To snuffle I was diagnosed in 1997 as well, though I'd been ill since 1994. My disease is somewhat relapsing and remitting, though I've never recovered fully from flares/relapses, and have had a generally progressive path. If I had MS I guess they'd say I had the secondary progressive form. And my symptoms are very close to MS. I've needed permanent immunosuppression to control things: I can't lower the doses much without flaring. I've been on steroids and Azathioprine since 1998. I hugely relapsed in 2004 and we've been battling much more since then. I've tried adding Ciclosporin A (pushed up blood pressure and then didn't control the disease enough), and more recently Mycophenolate Mofetil which is working well - maybe that's another drug you could consider? It's being used increasingly for severe vasculitis and is less toxic than Cytoxan.

I'm lucky that I still see the hospital doctor regularly, every few months, indeed most months since my huge relapse in 2004. I'm a challenging patient and wonder what I'll do when the consultant retires! I've got to know him well over a decade and he's used to my unusual disease and unusual path (i.e. not being able to lower immunosuppression much). Don't want to have to start from scratch with another one! I also have an excellent GP now who has been a huge help.

Anyway best wishes to you both.

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