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Hi all
I would really love to hear from anyone who has this, i was diagnosed in july 2009 and also had 3 strokes and would love to talk to someone about all this, as i need to others who understand as not many people seem to.
Thanks
Exercise Imuran Occupational therapy Chickenpox Bruises Vasculitis Plavix Pneumonia Whooping cough Topamax Prednisone Sarcoidosis Stress Dizziness CellCept Mycophenolate mofetil Incontinence Stroke Physical therapy Diabetes Fever Azathioprine Cytoxan Pain Weakness Memory Depression
I was diagnosed with cerebral vasculitis in 1997 though I became ill in 1994 when just 22. My form was slow to develop and looks like MS in terms of symptoms which made diagnosis much harder. I haven't been able to put it into remission too well, and am still on the cytotoxic drugs and steroids years on. But still here, and positive. Any other questions you have let me know and I'll be happy to answer about my experience.
You can add me to your list too. I was diagnosed in 2006. I've had myltiple strokes, and was "let go" from my job as a teacher after my FMLA ran out. Feeling better now, and trying to return to work. Hi yockenthwait, seems were always responding to the same posts :)
There is a small bunch of us on here that correspond, so there are several long threads.
Cheryl
Dear Rooann,
You might be able to network with others who have cerebral vasculitis by going to the website of the Central Nervous System Vasculitis Foundation-- http://www.cnsvfinc.org/ In addition to providing good information about the disorder, they also have an e-mail group that you can join to speak with others.
Best of luck to you!
Stefanie Putkowski, RN
NORD
Sorry to hear abot your problems...I was diagnosed with CV in 2000...Still here and fighting!...thoough I wonder why I bother sometimes!...Take care...We're all here for you....Paul...
Hi it is great to hear from you, i have been diagnosed with CV since end of july this year and so angry and confused, i have a good job, family and life, and its so frustrating, and the doctors have no idea why or how i have this, i am at the early stages and look like a plimp from the meds. although i feel really down which i am sure everyone goes through i am eager to find out about it and i am seeing the consultant in 2 weeks and boy do i have a list.
i am very confused with my symptons and have tried to seperate them as it looks like the steriods are causing so many side effects but at this stage not to sure, i am hopiing to start redusing the steriods but i keep thinking what if this is as good as it gets, i am also really concerned about reducing them as it seem quite a lot of people have relapses when they do.
As you have lived with it for a while how have oyu been doing are you back driving ect, my main concern for that is the dizzyness do you still have it i feel that i live in a gale force 10 for most of the day, and spend a lot of time walking in to doors and walls. i heave so much to say and so many questions i am going to drive you made, anyway i will wait for you to contact me take care and talk later X
Hi there Cheryl, hope you are doing ok today.. it was not very nice to hear about your job and you live here, very worring...i have not found many people with CV and there is a lady in Australia diagnosed in Jan this year, I have e-mailed her but no reply yet she seems isolated with it, i have been everywhere with this 3 different hospitals and all doctors want is a biopsy, which they are not getting from me. i would love to know your symptoms and talk to you about the dreaded steriod the drug we love to hate. please could you and Yockenthwate and Paul add me as a friend so we can talk together that would be great.
seeing the consultant soon adn would love any suggestions for my list of things to ask him, i am up to 3 pages, but my dad states i have asked him some already but my short term memory needs work so i am the post it queen at the mo LOL. talk soon take care Annie X
Hi Paul Hope you are well, i have replied to the others and not really sure how this works and what you are able to see, please keep your chin up and I know everyone says that and time is a good healer Blah Blah Blah, thats not what you want somedays when things are tough, this is tough and i am only at the early strages so i am trying to keep optimistic but i know it is tough after such a time, are you still socialising and working and how has that gone. will talk soon. AnnieX be brave
Hi rooann,
I'm not driving. I stopped driving completely in 1995 because I had several near accidents and my vision was becoming very dangerous. That's the one symptom that improved a lot with chemo/steriod treatment, so I started driving again very occasionally again around 1999. But basically I'm not driving, except maybe once a year (if that), when hubby's away, and then only short journeys down the hill to Tescos. I'm too dangerous to drive more. Even though my vision's improved I have lots of trouble controlling my arms and concentration is a nightmare. It's just not safe. DVLA and the doctors are happy for me to drive, but I think they grossly underestimate the danger, partly because the disease is so rare and they don't fully appreciate my symptom pattern. I'm not taking chances.
I can't work with this either. I was a full-time PhD student when it struck when I was 22. I had to leave that. I'll never be able to work again. My form of the disease is progressive, albeit somewhat relapsing-remitting, and we are struggling hugely to slow it down.
Sorry to hear you're so angry. It will ease. I didn't go through that stage because there was a 3 year delay before I was diagnosed. I was just incredibly relieved to finally have a positive test (MRI brain scan), and then get a proper diagnosis. The only anger I'd had up until then was with the doctors who were pigeon-holing me as an ME patient and weren't looking into the more worrying MS-like things (severe bladder incontinence and visual problems). It turned out that I had true cause to be concerned. Had it not been properly diagnosed I suspsect I'd be dead by now. Cerebral vasculitis only ever used to be diagnosed at post-mortem stage. Luckily we're living in a much better time, medically.
As for distinguishing between the steroids and the disease what specific symptoms are you worrying about? I was able to lower my steroids fine early on in treatment (I was on a huge dose, and managed to get it down to 2.5mg every other day). But since 2004 lowering steroids has been very fraught with me. The disease has fought back, I've had more brain damage/progression, and I'm not keen on it. This is despite whacking up the Azathioprine and Mycophenolate Mofetil immunosuppressants I take. I've recently had to put my steroids back up from 10mg to 15mg, and am not sure what we'll do next. My immunosuppressants can't go higher - they're at virtually maximum doses.
Hang on in there.
yockenthwaite
rooann.
I understand your anger. I too, feel as though my life was stolen from me through no fault of my own. I think yockenthwait has a remarkably upbeat and positive attitude. For myself, there are worse things than death. I've gone over all of this with my family and physician, and I have an advance directive. I will not be another Terri Schiavo (SP?)
I don't drive either. The multiple strokes have devastated my visual cortex, People say "you should be thankful that you can speak, and are not paralyzed. " That's their perspective. Reading is my life, and, was my livlihood. I would much rather be unable to move or speak. It's all a matter of perspective.
I hate "looking fine". I don't feel that I should have to keep reminding family and friends that all is not well, and that I'm not "fat" because I've let myself go. Sometimes I hate people. If my husband doesn't stop harassing me to go back to work, knowing full well that I've applied everywhere, even as a sub, and I volunteer on a daily basis, just to get my face out there, things will not go well. We sold the big house, and moved to this tiny one specifically because I was no longer able to work. Did I say that I hate people:) You asked about dizziness. It is a recurrent symptom for me. Usually it comes and goes, but for the past 2 weeks, it's been with me 24-7. I don't even know how to word it when I report to the Dr. I feel extremely woozy, as though I may pass out, and anytime I move any part of my head, even my eyeballs, I feel as though I will fall. Sometimes it takes the Texas 2 step to stay on my feet.
I'll stop whining now LOL Thanks for listening.
Cheryl
Hi! Good to have understanding friends...Rooann, take care...praying for you!...Paulxxx
Hi thanks for your replies, i think as this is so new to me that I am having a hard time i feel that i have to know everything and i too am a pigeon person could be the nurse in me !! it has taken me weeks to understand what has happened to me and im a senior sister at the hopstial i was taken to, that is another thing being so ill in the hospital you work and knowing what they are talking about too,....i have been to Addenbrookes and the London Hopstial at Whitechapple, and i think i have finally regained the blood loss, still have brusing on my stomach though, and they finally gave me a diagnoses, i really am at a loss as i have had no signs or symptoms and no trauma or infection i was out in my new little convertable mini and felt really dizzy sick called hubbie who got ambulance and dont , remember anymore for nearly 2 weeks, i think that is why i get frustrated, also being fat is horrid and i am going on a cruise in November and have bought larger clothes not nice, but at least i am going. I too find it very annoying when people tell me that i look good, cos they dont know how i feel. I did loose my temper a bit with the Theapists the Physio told me im not that bad, I was so amd i asked he compaired to who....i know that i am not that good some days i can walk with my stick and not hit the doors and walls and some days im in my wheelchair, people dont always understand, and i know what it is like to dislike people i have been a nurse for over 20 years and it was going down hill for me prior to this, now when i am in my wheelchair people dont even see me im thinking of getting a horn for it, that would be fun.... I am seeing the consultant on 16th oct and seeing the physio on the 14th oct hopefully i can start moving and getting my medication reduced even only slightly would give me a boosed. I really would love a postive attitude but not at the moment and i told my mum today that i really dont want to hear it will get better, your still here blah blah blah, tell some who cares cos i dont today, so i am with you Snuffle with the whinging...it is really good to talk to you all and i will write again and thanks so much for being there.
I get incredibly annoyed with people who tell me I'm looking well, but I've given up arguing with them about it, and try to chill out. It makes me disappointed more than anything else in the people who I would expect to behave better than that. Many illnesses are "invisible". The only visible signs of my disability are balance problems, using 1 or sticks or a wheelchair, and staggering around, or falling. They don't see me crashed out all the time, or rushing to the bathroom constantly. Or struggling in so many other internal ways.
So I guess that's one way I've had anger since diagnosis, but it's one of the few. As I said I had a really tough and long time to reach diagnosis, so relief was the over-riding emotion, out-doing anything else.
I have hit phenomenal lows though, especially 2-3 years ago when the disease was still fighting back and the consultant was fast running out of treatment options. I was preparing myself for the increased likelihood of death. But I got through, and I'm still here.
Keep posting here and communicating your thoughts with us. We're going through - or have gone through - the same things, so can understand.
yockenthwaite
thanks so much it really does mean so much to me, i know that i will get a grip mentally cos this is not me i am usually such a much nicer person and i know that i will work hard to get as much back as possible i think i shall make a sign 'not always as good as i look' it odd but sometimes in my head i feel i could do it all and then 10 mins later asleep, alien to us all and i know i will get there, you take care and i will e-mail with hopefully nice things to say....not sure how this works if i email here and click post, does everyone see it or do i reply to each person talk soon X
If you email here and click post everyone should see what you've said, so we can all join in the conversation. I can see your replies to Cheryl and Paul for example, as well as the posts of other people in the thread.
Picking up on Cheryl's point about reading: that's a huge problem for me, though it's not due to the visual problems any more (which did improve with initial immunosuppressive treatment), but more due to cognitive problems with my brain. I can only read a page or two before I get very tired, and I also forget very quickly what I've read. Over the years I switched to large print while the vision problems were initially very bad, then to short stories, then to just articles etc. Now I'm virtually unable to read a book and I miss it a lot. I'm supposed to be finishing a part-time PhD at the moment (well I am!), but part of that includes an expectation that I can read masses of academic stuff - hefty books and journal papers. Over the last 5 years my reading ability has plummeted. My supervisors are only starting to grasp the severity of it.
As for how I cope emotionally with it it's difficult, but I'm sad about it more than angry. I've had to get used to this over a long period - over 15 years so far - and being angry for that length of time wouldn't do me any good. So I've come to some acceptance. But I'm still sad.
yockenthwaite
yockenthwait,
That was really well put. I'm sorry to hear that your reading problems are getting worse. It was so uplifiting to hear that you were geting a PhD. Made me think that maybe I could do it too:)
I had problems with attention and recall at the beginning. Still do, but I've accomodated somewhat. I was told it was characteristic of the disease. I guess that made it easier to accept. Have you approached your Dr. about taking any of the medications for ADD. I don't know if they would help in your case, but that is what they do. Increased attenspan, even drug induced, may help you slog through those huge books.
Cheryl
I have a general question for anyone. I'll be seeing the neuro tomorrow for yet another round of blood work. My counts are dropping, but when I decrease the cytoxan, all of my original symptoms come rushing back, so this is not an option.
My question is, when you talk about pain that goes with your disease, what does it feel like? For the past 2 weeks, I've felt as though I've got a horrible case of the flu, you know ,when you feel that even your hair hurts. I can't even cross my legs or lean on anything without leaving bruises, I'm that sore to the touch. But, I don't have a fever or any respiratory symptoms. Just this constant pain in all of my muscles, and, apparently on every square inch of skin surface. No pain in the joints, go figure.
Iknow it sounds weird even to me. I don'y know if I'm being a crybaby and the rest of you are experiencing stabbing pain or worse. Has anyone else ever experienced something like this?
I don't get pain with my cerebral vasculitis, except for headaches which are fortunately generally mild. My main problems are much more the typical MS types of all other parts of my body not working properly, but not pain.
Hope the neuro can help you snuffle. Could you possibly have an infection though? I caught swine flu 2 months ago and barely had any signs of a fever with it, probably due to being so immunosuppressed. I was coughing badly though, and had all the muscle aches all over.
Also Snuffle if you're bruising easily could your immune system be too suppressed at the moment? I've been warned by my doctors to look out for too much bruising, and go to them immediately if it starts to happen. I'm permanently on Imuran, Cellcept and steroids, and the first two of those can knock the bone marrow too much, leading to problems including excessive bruising.
Hi, sorry to butt in on your discussion, but I have been lurking for awhile trying to educate myself. Mostly probably to no avail as Dr's seemed determined to be dumb and unhelpful. Anyway, my story is as follows.
April/May started experiencing dizzy spells, nothing that had me falling over or rushing to the Dr, also started getting pressure type headaches that would be around all day. Put it all down to stress due to the passing of my mother. When they did not go away, I went to PCP who did CT, normal, then when I said I felt I was having some cognitive problems he sent me to neuro who did MRI, MRI showed multiple small foci, too many for someone of my age (39, female) could be demylination, vasculitis or other eteoligy.... Neuro said prob not MS go to Rheumie, likely autoimmune as I have autoimune thyroid and elevated ACE...maybe sarcoidosis. Rheumie says not, go back to another neuro who deals with headaches/migraines .... you get the picture. I went back to my PCP who prescribed Topamax, but I woke up first morning feeling like I had a brick on my head, and dizzier and than ever. He also is sending me to ENT to see if cause is inner ear saying we have an unexplained cause for my abnormal MRI.
Tell me, what does a person have to do to get anywhere close to a diagnosis of anything? Should I be persistant and go to another neuro? Will my insurance have a fit? I am from New Zealand, I currently work in the USA (short term) and have 2 kids. My headaches come and go in severity but would not descirbe them as migraines. My temples feel like there is a vice grip on them which gets worse after exercise, I feel like i have a cap on my head all the time and then get like a 'cluster; of pain that will migrate from place to place around my head. The dizziness is like a lightheadedness, that can be worse when I change positions or can be just laying in bed or go from crouching to standing.
I am maintaining a partime job as a Radiographer but feel I have some cognitive problems mainly with conversation/thought processes and trying to make sense or order of new information.
If you have any suggestions, it would be much appreciated. I feel like downloading the info off the website you have listed previously for the foundation and taking it to my DR, but wonder how far you have to take it to get anywhere. I also wonder if my symptoms are serious enough for me to really be worried or if I should just shut up and get on with my life.....
Thank you
kiwi
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