sherree lewis

[sherree]

can anyone help have just been diagnosed with cerebral vasculitis and have told it is all over my brain and this is a very rare desease they want me to go on mycophenolate any body with info would bve appreciated

[Nadine99]

Don't be too upset by all this. It's always a lot to take in but you will come to understand more about your illness and learn to cope with what it throws at you. Other people on this site will give more info I'm sure but do look at the Vasculitis UK website where there's tons on information.

Best wishes

[sherree in reply to Nadine99]

Thankyou xx

[Suzym2u Moderator Vasculitis UK]

Have you looked on the website Sherree vasculitis.org.uk/about-vas...

There a few members in the group who do have CNSV and I am sure they will respond to your post.

Best wishes

Susan

[sherree in reply to Suzym2u]

Thankyou xxx

[woollysox]

Hi Sheree,

because it is so rare and symptoms vary depending on which parts of the brain are affected, info seems not that easy to come by, but there are a few members here with CV, all of whom are very lovely and helpful.

I was diagnosed with cerebral vasculitis in February so am still coming to terms with the condition.

My symptoms are similar to MS with main problems being with walking/balance, fatigue, sight, memory and cognitive issues. I am currently being treated with high dose Prednisolone and monthly Cyclophosphamide infusions, but maybe others have experience of Mycophenalate.

What symptoms do you have and where are you being treated?

[sherree]

Hi I was fist diagnosed in 2011 with it in my eyes they put me on the azathioprine but it made me very ill so came of that then they decided to inject both eyes, that is still ongoing but august last year was my first stroke, since then I have had another 6 strokes 3 major where it took all left side but it hasnt left me disabled as yet, but am terrified of having another, and it is likely because they have now said the disease is all over the brain . I am under a neuroligist at sandwell hospital also Queen Elizabeth and they are going to start me on the drug Mycrophenolate next week, I was going to go on the Cyclo one but they decided against that as my mother died of cancer. They say that the Mycrophen will stop me having further strokes I am on steroids also and had to have 3 bags infused in October then i am on tablet form which I will have to continue with along side the Myco. Gee scarey stuff frightened to death xxxxx

[vivdunstan Volunteer]

I've been living with cerebral vasculitis for 21 years now. And I'm still here! This is despite my case being quite difficult to treat, and relapsing big style in 2004. I'm also very positive. Mine, like woolysox, is very similar day to day with MS. Including in my case a very severe MS-like incontinent bladder. Made attending an academic conference yesterday interesting ha! Thank goodness my wheelchair was near the disabled toilet

My story is online at vasculitis.org.uk/living-wi...

I would be happy to answer any further questions you have. I've been on Mycophenolate Mofetil since about 2005/6, and it's been a big help for me. Oh and the Cyclophosphamide I finally had in 2012 probably helped me more than my online story suggests - initially it looked as though it was doing me anything but good.

[LeoDiva]

Hi there,

I was diagnosed with systemic vasculitis and antiphospholipidnsyndrome in January 2014, which includes cerebral vasculitis amongst other affected organs. I was initially put on high dose steroids, warfarin and mycophenolate. Steroid have gradually been reduced but mycophenolate increased as like others with this problem I have suffered mobility and balance problems and cognitive issues and still suffer from chronic fatigue related to the CNSV.

I will say however that despite the fact that some days are inevitably worse than others it has been manageable and I feel positive for the future knowing that finally all those symptoms have been explained and are being dealt with. I have not suffered any side effects from mycophenolate and my bloods are regularly monitored to ensure this is not having a negative on my system.

it may be scary right now, as I too felt like that, but there is no reason, as long as you have a good consultant, that you should not be able to find a way to live with and manage any symptoms you have.

I count myself fortunate as being one of the lucky ones that has been diagnosed before any life changing event, which was clearly very close to occurring, due to a very on the ball ophthalmologist and every day whatever niggles I may have I give thanks for that.

[Kat13]

Hi Sherree. I was diagnosed with CNSV ten years ago. My onset symptoms were seizure, severe headaches and possible brain bleed. I too have extensive damage to my brain but luckily the damage has not affected me in disabling ways. I was diagnosed two and a half months after initial onset and was treated with cyclophosamide and prednisone. Though I had headaches and fatigue for many years, I was in remission until a recent flare that began two months ago. Though I have had a full vasculitis workup, they have not found active vasculitis in my brain. I now have live do recticularis, petechia, have had a seizure and am experiencing a lot of numbness, fatigue, brain fog and head pain. I saw a new rheumatologist and he has tested me for HughesSyndrome (APS). I should get the results soon. I was never tested for this before. My rheumatologist was very surprised that my doctors did not continue to follow me once I was in remission. I can understand that this must be a very scary time for you. After my diagnosis, I felt that my job was to look after myself in a very determined way. I ate well, exercised and took the time I needed to rest and recharge. This is so important I believe and it is hard for some people to do but your health has to come first now. I also hope that you trust your team of doctors and if not, that you get doctors that you feel really know what they are doing and are giving you best care. In hindsight, I wished I had done more research to really understand what happened to me. As you can see on this site vasculitis is a very tricky disease and I think it is important that we become experts in our own disease. I hope you begin to feel better soon. It's hard not to be stressed and scared but finding ways to de-stress will be helpful to help you recover.

[sherree]

Thanx for reply Kat , really appreciate all feed back as feeling isolated and in fear of other strokes caused by this condition . I am told by neurologists that they dont know a lot about it and that is even more scarey.

[Kat13 in reply to sherree]

Hi Sherree. Maybe you can help your doctors and yourself by collecting all the best quality information from web sites such as this one and current studies etc. There is much to learn and more information available than ten years ago even. Make a file and highlight all that refers to you and your symptoms. I think a symptom/medication journal is a great idea too. I recently requested over 400 pages of health files related to my cerebral vasculitis. It was tedious work just to figure out what my total intake of cyclosphosamide or prednisone was. Had I kept a journal for future reference it would have been helpful. This time my journal of systems has been so helpful because the disease has effected my memory. I would forget half the symptoms if I didn't have them all written down. Before I go to a doctor s appointment, I make a one page point form list with all symptoms and or/ side effects. And I also use my journal to write down my list of questions. Honestly sherree I have seen so many neurologists, rheumatologists , ER doctors etc, who have never had a patient with CNSV so it is really up to us to be well informed and seek specialists who are also well informed.

I hope your neurologists are consulting with those with experience. Can you request to meet with a specialist. Your illness seems to be getting progressively worse in the last four years. I hope they will find an appropriate treatment that will prevent strokes and more damage. My thought are with you!