New to all this

Hi all, have just been diagnosed with cerebral vasculitis and am trying to find as much info as I can - not easy as there seems to be very little clarity out there.

I had three strokes in three weeks in Jan/early Feb, but was diagnosed with MS as all tests, ie MRIs, lumbar punctures, cerebral angiogram showed mixed pictures. Then, just as I was getting used to the idea, they hit me with this today.

Is there any literature around that would explain this disease both to myself and to family and to managers at work?

I have no idea what to expect and can't get to see the consultant for another month, my GP has no understanding of this, can anybody give any enlightenment in the meantime?

11 Replies

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  • Hi,

    Sorry you have to be here but welcome to the group.

    The VUK website has a bit about CNSV here :

    vasculitis.org.uk/about-vas...

    Do remember though that vasculitis tends to affect different people in different ways and so you will likely not have all the symptoms or problems that are mentioned. Your consultant will be the one best placed to tell you how the disease will affect you personally.

    I know there are a few people on here with CNSV so if you have any questions ask away and I'm sure someone will be able to help you.

    All the best,

    Richard.

  • Thanks for getting back to me so quickly, Richard, that's much appreciated. It's good to know that there is support out there.

    Major symptoms at the moment are fatigue, right sided weakness and double vision. I have difficulty walking the length of the cottage unaided, never mind contemplating going back to work. With the MS diagnosis at least I was classed as disabled and couldn't be dismissed, don't suppose that's the case with CNSV?

  • You're welcome. But I'm afraid as I don't have CNSV myself I'm probably not best placed to advise you. However there's more on the VUK website about living with vasculitis in general :

    vasculitis.org.uk/living-wi...

    I think things are tricky gaining blue badges, benefits, etc. with vasculitis, purely because the various departments don't know about or really understand the disease. But I know there are people on the group who have successfully navigated this minefield and I'm sure they can offer some advice.

  • Hi Woolysox,

    Sorry to hear of your diagnosis. As Richard says there is good information on the VUK website and if you get in touch or e mail the helpline they will be able to send you some printed info about Vasculitis to give to your work and family.

    I am pretty sure that all types of Vasculitis are covered under the Disability Equality Act and as such your employers will have to make reasonable adjustments. Until you see the Consultant and treatment plans etc become more clear then your employer will just have to accept this situation.

    As CNSV is so rare I would recommend making sure you see a Consultant who has experience in treating it. There are a few people on here with CNSV so hopefully they will be along soon to offer specific advice. If you are on Facebook the VUK group is very active and supportive as well.

    Best wishes

    Keyes

  • Hi

    I am not going to be of much help but I have PANCA Vasculitis. I have had 3 minor strokes over 3 years. No one can answer why what it is and one set of notes mention Query Cerebral Vasculitis?? I have had Vasculitis for about 15 years and the strokes only kicked in, in the last 3 Years and my last one was February 2014. My first stroke was the worst and loss of words and loss of what I was saying, had Speech and Language Therapy which was of great help. I also lost the "normal" use of my right side, walking extremely hard and weak plus critical Tiredness and tell doctors that the tiredness will kill me! it is awful!! that I had to pack up as an Artist, as my concentration span was not long enough BUT playing silly simple computer games, I feel helped to keep the brain ticking. Recently started taking some Borroca which has helped after a week ( need to check it with the doctor). My second stroke I got away easier and put the tools that I knew to help in place. My 3rd stroke affected speech again and right side.

    The problem I have is fine I have all stroke symptoms, gone to GP shown them and an Ambulance called but once the scans are taken and see nothing they discharge you (Neurology) the last one they transferred me to a general ward and helped me with seeing a therapist and use a walking stick, have a sitting stool in the kitchen; I asked them that I needed to know what procedure to take in future as it "seems to be a waste of Emergency,scans, neurologist etc.." as soon as they see the scan shows nothing. So the hospital doctor referred me to a Neuropycartrist which thankfully came up with nothing and then sleep apnoea and that came up with nothing, so I am back to square one "What Do I Do!" asked GP and suggests to monitor it and if it gets worse to dial 999 ? I do and have several instances where I feel a mini minor stroke come on as numb head and speech slurs and tidiness.

    As everyone has said it seems to be a hard one to tackle or get diagnosed. If your speech is affected, I would suggest you speak to your GP to be referred to Speech and Language. If you are unable to walk far the GP should refer a Physic to see how you cope at home ( I started with a Zimmer then walking stick and now am al most free of a walking stick).

    Becareful not to loose your confidence and work on your GP to get you the required referrals that you need to maintain your mobility and general lifestyle. You will become stronger but take each day at a time. I use to use a pedometer and each day hopefully walk a few more steps!

    Sorry long winded but may be of help.

  • I do have Cerebral Vasculitis, diagnosed in 2005. I am more of than happy to answer any questions you might have if you want to private message me. Vasculitis is rare and cerebral Vasculitis is a rare group within that cohort. Now that you have a diagnosis you can start your treatment journey. Things have improved immeasurably in recent years but due to the rarity of this condition your GP may know little, you may be the only patient they have encountered. Stay positive. Where are you being treated?

  • Hi all,

    thanks for your support and sorry I didn't reply straight away, have a stonking cold/cough that's put me out flat.

    Mia, thanks for your offer, that would be great - you'll have to let me know how as I'm useless at all this new-fangled computer stuff! In answer to your question, I will be being treated at Derriford in Plymouth, when appointment comes through. Seems like I've been left hanging for the moment :(

  • Me too, PCNSV, very mild (or low grade as they call it) fortunately. Main point is that CNSV ( cerebral vasculitis ) can be either primary or secondary ie. it is 'often' secondary to another form of vasculitis which may be the suggestion in your case Anthony01 (NB. I have no medical qualifications - just speaking form personal experience/info gained). You may want to ask about this when you next see your consultant.

    Woolysox - sounds like you have great support with Mia above. This is what this group does so well. I am happy to answer any questions you may have, but as I say, my case is mild atm.

    For what it's worth, I believe that you will soon find out that the person who knows your disease the best will be you as you begin to find the things that trigger your symptoms most. For me it's any infection, STRESS!!, not being able to do things in my own time and a slow deterioration in the times when I am drug free. I know that other members have shared the link to the Vasculitis Route Map that you have been given with their GP and the GPs have welcomed it.

    I am fortunate that I have a GP that listens to what I say and is open to discuss the ways to deal with it that suit me personally. This does include maintaining a regular (but not necessarily over strenuous) exercise routine which I find makes me feel both more proactive and positive. Obviously all of this needs a doctor's advice and I do hope your consultant will be able to answer your questions (start building a list now ;-)).

    Good luck!

  • Dear woolysox-(love the name, your 'tootsies' won't be cold then!)

    Have you read, or indeed ever heard of, the 'Roadmap for Vasculitis'? This, very comprehensive guide, is available through our sister organisation, Vasculitis UK. Contact John, or Susan (who 'posts' as susym2u on this forum). Otherwise via vasculitis UK 'web site'. I'm sure that, at least, some references will be contained therein, after all, just about 'everything' else is! There is, I believe, a small charge for this-really to cover production costs-though I can't remember the exact amount 'off hand'-useless aren't I?

    Anyway please do let me/us know how you get on, will you-and, before I forget.....Welcome aboard the 'Good' Ship vasculitis.

    Best wishes AndrewT

  • Hi Woolysox. Hope your feeling better. I have sent you a private message. You should see this as an orange blob on the bars at top of the toolbar once you have logged in to your account. You can also read my profile there. Keep finding your way around this site. I am a technophobe but still manage to navigate my way round - Credit to the techies who developed the site. You might also want to ask John Mills were your nearest treatment centre is that specialises in Vasculitis.

  • I assume you have inflammation of your cranial artery also called the temporal artery. Therefore you have Arteritis probably caused by giant cells ie GCA. When the artery which supplies the brain becomes inflamed, the diameter gets smaller, making it difficult to carry the blood to the brain. A doctor usually tries to feel a pulse in the temple to make sure the blood is still getting through. Yours might have become blocked causing a stroke (something similar happened to me). Make sure any other medicine you are taking are not vaso constrictors, ie narrow the artery even further. Get a stroke risk assessment, and take what action you can to reduce the risk.

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