Vasculitis UK
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Angry annoyed and feeling very unsure.Just been to hospital for LP but there was only a technician to do it.Total waste of time,my neurologist had told me it would be either a doctor or regestrar that would do it.Also had to chase kidney ultrasound results sent to wrong department.He also told me cns vasculities is curable,which looking on here is not the case.My history was wrong in that he put down I had 7 grandchildren I have none.Not sure what to do?1 mistake is a okay but 3.Not sure what I can do.Feeling very doubtful about all of my tests I have to go through and have gone through.Very low at moment,it's been along day.Is there any thing I can do????Thinking of asking to see my gp notes to see what it's all about.My health is very important but I'm been doing all this since October last year.

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I have just been to see a consultant privately as my GP refused to refer me. The consultant wrote back to my GP saying I needed major surgery! In the letter though he managed to get the drugs I am taking wrong, one I had never heard of. He also managed to say I could not do things which I had never even mentioned. In fact he got all the bits I could understand wrong apart from one. I assume the medical bit was right hopefully. I do ask for copies of everything nowadays and the errors are unbelievable. My GP even managed to say my blood markers had gone down when they had gone up, written next door to the results. The letter my GP wrote to the consultant had three errors in it even and the information was taken from my notes. Goodness knows if it was a transmission error or my notes are rubbish too.


Definitely doesn't give you confidence in your Doctor of Consultant!!!


I think I have really upset my GP as I had a phone consultation with him this week and told him he had cost me a lot of money by not referring me. He said why are you complaining you know the results now! Anyway I'm free, so I pointed out I was a taxpayer! I think I may have burnt my boats.


I got told my blood results were normal in April, but got a letter two months later saying I had p-anca in those bloods! (possible vasculitis)

Now I'm pushing to try to get a consultant to get to a diagnosis. Saw my GP to redo the bloods yesterday. I will get the results myself, printed out and in my hand! They are mine after all!

KIdney ultrasound organised, as proteinurea ++ found.

I will then take them privately to a consultant. I think you have only one person you can really trust - yourself!

As for being curable, I think most vasculitis are stoppable with drugs and stay in remission, but I've not even been diagnosed yet.


Thank you for replying.May have to look at going private for diagnosis.As it seems quicker and at least I will feel more at ease.I have all my medical corespondence from hemotologists and neurologist.Just may have to get copy from my gp for all my blood test results.The hemotologists has put down blood results in letters but for unknown reasons my neurologist has not.Thank you both for your time and advise.


Where are you seen for your vasculitis? Maybe you need a referral to a hospital or doctor who has experience of CNSV. You can contact the VUK helpline for advice and support


This seems to be a common and universal complaint, wrong information on our charts. I get copies of everything now especially all my consult notes, after finding a number of mistakes in some. In one I was referred to as 'morbidly obese' and at the time I weighed 105 pounds lol. I think they are just too busy sometimes and even get patients mixed up. Good luck!



Well I suppose you could be morbidly obese if you are only about two foot six inches tall!!!

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Dear Jan,

Without, in any way, being 'patronising'....You poor girl! Again without being too crude (well OK a bit) just what the FUCK are 'they' putting you through!

Two questions, not unrelated- firstly which Hospital are you under, Secondly can you get to Cambridge? Dr David Jane, and his team, are based at Addenbrooke's-he is an advisor, to Vasculitis UK (or Sister Organisation). Dr Jane is also, though some will 'argue' this one, the best Vasculitis Consultant there is. (Even if you don't believe that, he IS extremely Good). Would your G.P. give you a referral? If not then 'jump up and down', at your current Doctors/Consultants. (However you do it, please DO get a referral Jan).

Can I assume that you, like most of us, get 'Tummy Troubles' ? Yes I thought so, these 'things' ARE, very much, connected/related.

Anyway I really do wish you better Jan-I KNOW that we all do. Please do try to get the referral Jan.

Kindest wishes AndrewT


I don't get tummy troubles.My symptoms are tias thunderclap one of headache last year with vision problems.pins and needles in hands and feet.tightening feeling in left side of face aches stinging on my head and high wbc count.And recently a shingle outbreak on the back of neck,which gave me pains but has cleared now.Oh and polyps in my nose,recently had nasal endoscopy. Been put on dymista for that and nasal water spray.Long history of blood pressure on meds for that.Neurologist thinks there may be a conected.Giving to the end of week for a reply to situation.Then may consider gp back to gp for a refferal else where.fingers crossed.I do feel worried about the hotness and tightness at the side of my face 🤐


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