Newly Diagnosed...

[MsAscerbic]

I've just been diagnosed with vasculitis. Haven't even got a specific diagnosis yet as my PET scan isn't until next tues. Symptons are an inflamed aorta blood vessal in my stomach and constant back pain.

I'm only just beginning to realise how debilihtating this condition is. I'm only 36 and have two kids! I can only only walk short distances and any activity leaves me exhausted and in even more pain.

I was wondering whether there were any other sufferes in my area? (norwich area) and what your experiences with treatment/service have been like. My docs are being very unhelpful and I'm thinking of switching, but would like a reccomendation to somewhere that will be accessable and helpful.

Sorry if this is a bit moany, but I have to admit to being confused and a bit frightened by everything thats going on. I suppose until I get some answers I just have to live with it, but its hard. The information is so varied, especially about treatment, and its full of jargon I've yet to get the hang of. Just looking for vasculitis buddies really!

[John_Mills Volunteer]

The Vasculitis UK website has very relaible information about all the different types of Vasculitis and living with Vasculitis...

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

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

There are many people you can talk to in the group and everyone of them will be very helpful. If you want to talk to John, he is chairman of Vasculitis UK by email or phone please do.. John has Vasculitis and maybe able to help you with finding a good hospital/consultant and also with advice on a proper diagnosis. [e-mail] 01629650549

take care

Susan

[Nadine99]

Hi there, we were living just on the Norfolk/Lincs border until a short time ago. We insisted that our GP refer my husband who has WG to the specialised clinic at Addenbrookes. It was an hours journey for us but well worth it. They have all the skills in one place and he was looked after at each appointment very thoroughly. It's sad for us that we've moved to Devon and are about to try to find new specialists here. Best wishes

[longbank123]

I can sympathise with you, I have had vasculitus now for 10months, I see my consultant weekly for blood tests and urine tests. I take lots of tablets for my condition and plod on each day. I get tired very easily, my consultant has told me that if I get any problems get on the phone to him, as my doctor wouldnt be familiar with the symtoms as it is so rare.

[JElsom]

Hi. I have Takayasu Arteritis which causes inflammation of the large blood vessels including the aorta. I live in North Essex and fortunately only live about 20 minutes from Addenbrookes, Cambridge which is where I get treated in David Jayne's clinic. It's a really nice clinic and everyone is helpful and supportive. Please feel free to message me if you have any questions.

[MsAscerbic in reply to JElsom]

Hi there, sorry its taken me a while to get back to you, but things have been frantic. I've got an official diagnosis of Takayasu Arteritis now, which at least means I can cram up on the medical info.

I've been put on an agressive steroid regime, mainly because of where the inflamation is (near my kidneys) and have just got to wait and see what happens I suppose.

I was wondering if you could give me a bit more info on how this affects your everyday life - the mundane routine etc. Do you tire easily? Does it affect your movement? Does the pain subside, or is it always in the background?

Hope you don't think I'm being too nosey, but I just want to speak to someone with the same condition and find out how it affects them.

Thanks for your time!

Helen xx

[BronteM in reply to MsAscerbic]

Hi, so glad you have a diagnosis, as for some reason that makes one feel different!

I've also got Takayasu's, and was diagnosed in January this year. I am now being treated at Addenbrookes, and am waiting to go again in a couple of weeks as they want to change my drug regime.

As for the fatigue, it's still with me, but much of the pain has reduced and is more manageable. I find the worst thing is the unpredictability. I can do quite well on a good day, but not on a bad one...... And until I get up each morning I don't know which one I'm facing.

Do send me a message if you want to chat. I found that so important in the early stages.

[Essex-jill]

Hi. I remember how frightened I was when I diagnosed over 13 years ago.

I agree you should ask to be referred to Addenbrookes and Dr David Jayne. I transferred many years ago from my local hospital in Essex and it's the best thing I could ever have done. Dr Jayne and his team really listen to how you are feeling and not just go by your blood results. Stella the senior sister and Sue Reid the secretary are very helpful.

Remember you are not alone and feel free to ask any question on this website, we all try to support each other with this rare disease. And yes we are all vasculitis buddies !!!

Try to stay positive and when you see any doctor take a list of questions you want answers to and then you will feel more in control and less fearful of the future.

Sending you best wishes . Please feel free to message me also with any questions you may have.

Jill x

[Mooka]

Hi I live in your area and my experiences with the N & N are varied. Some doctors I could have poked their eyes out, others were brilliant. To be honest if you are going to be referred somewhere else I think you would be best to go to Addenbrooks as they are the specialist hospital in this area. I have spoken to my GP about being referred there and have also spoken to John and Susan about their experiences there and they were very helpful. I haven't yet decided to do this because of the distance involved. I understand that you can opt to have your tests and treatment locally and that they do telephone appointments to save you going to Cambridge. Keep looking at this website and the vasculitis website as we are all in similar boats. I'm happy to chat/message you about your experiences and please feel free to moan!

[AndrewT]

Dear Ascberic,

First of all try not to woory too much, I know tha that is difficult right now! Everything is happening at once! Do try to find out as much, as you can, about your own condition, we are all diffferent- what is this a Monty Python Film???- so 'treatment(s)' will need to be tailored to to your specific condition. Have a 'chat' with your consultant, when you can.

A word of 'warning', if I may be so bold; by all means 'look up' your condition 'on line'- it is a very helpful tool. However PLEASE DON'T 'read something' and then decide this MUST be what you have!!! I'm sorry if this sounds like I'm 'condemming you' for something you haven't yet done. I'm just concerned that you don't get worried, more than you already are that is, by reading 'something'.

Please feel free to contact me, through the forum'; I'll try to reply, as quickly as I can.

Hope you don't feel that I've 'torn you off a strip' Sorry if you do!

Best wishes anyway

AndrewT