Finding the right specialists : Hi I have been... - Vasculitis UK

Vasculitis UK

7,946 members6,976 posts

Finding the right specialists

Jay_fer profile image
7 Replies

Hi I have been tentatively diagnosed with cnsv, However, I am constantly told my tests are inconclusive even though I am responding well to treatment for cnsv. I am trying to push for some kind of consult or liase with a cnsv specialist if such a person exists??? Anyone have knowledge of such a person please? I am nearly 4 weeks in hospital now... very frustrated🙈

Written by
Jay_fer profile image
Jay_fer
To view profiles and participate in discussions please or .
7 Replies
Christophene profile image
Christophene

So sorry; I don't know as I live in US, but I have seen Dr.Jayne and team at Addenbrooks mentioned repeatedly . You can also contact the NHS I believe.

Jay_fer profile image
Jay_fer in reply toChristophene

Thank you😊

Suzym2u profile image
Suzym2uModeratorVasculitis UK

Which area of the UK do you live? CNSV is so very rare so it is important you do see doctors with knowledge understanding and experience of Vasculitis.

Jay_fer profile image
Jay_fer in reply toSuzym2u

I am in the north west UK but prepared to travel!!!

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply toJay_fer

There are specialists in London and Cambridge at the Vasculitis and Lupus clinics there. There is a multidisciplinary Centre for treating Vasculitis and Lupus at the Kellgren Centre in Manchester. There is also a consultant in Oxford.

Most of the well known Vasculitis clinics and multidisciplinary centres do liaise with each other and will discuss complicated and complex cases.

The smaller hospitals will have less understanding knowledge and experience of

Vasculitis especially CNSV .... and don’t always liaise with other more experienced hospitals.

Vasculitis is classed as a rare disease...there are 18 different types and some types are exceedingly rare so it’s important to see doctors with experience knowledge and understanding,

Jay_fer profile image
Jay_fer in reply toSuzym2u

This is very helpful and supports what I have been experiencing first hand, acknowledgement of it’s rarity but reluctance to seek outside knowledge... easier when it’s not their rare and interesting condition! Thank you for the information ☺️

AmyS1 profile image
AmyS1

Go to Addenbrookes. Some London hospitals may be okay but not all. If you need a special treatment Guys London struggles to get it .

Not what you're looking for?

You may also like...

Question from a member of the fb group if anyone can help or has experience, please

"Hi everyone, is it possible if you could help me. Yesterday I was told that I have atrophy/amnesia...
Suzym2u profile image
Moderator

Cnsv and susacs syndrome

Hi I was diagnosed with cnsv a year ago next week but neurologist changed it to susac syndrome I...
Debbie_50 profile image

Pregnancy and Vasculitis... ?

I would like to ask a question... has anyone been diagnosed with Vasculitis, during or just after...
John_Mills profile image
Volunteer

London hospitals specialists

Hi can anybody recommend an hospital/specialist  in the London area.  I have been under the Leeds...
Louzoejf29 profile image

CNSV and brain damage

I have posted in the past few months about my "relapse" symptoms of CNSV diagnosed and treated in...
Kat13 profile image

Moderation team

See all
zoe69 profile image
zoe69Administrator
Allotmental profile image
AllotmentalAdministrator
JaneLE profile image
JaneLEAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.