Finding the right specialists

[Jay_fer]

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🙈

[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 in reply to Christophene]

Thank you😊

[Suzym2u Moderator Vasculitis 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 in reply to Suzym2u]

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

[Suzym2u Moderator Vasculitis UK in reply to Jay_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 in reply to Suzym2u]

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]

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