Cryoglobunemia

[Alvess123]

Has anybody been diagnosed and treated for this? Information seems scant and I only found out that I need to see somebody other that a haematologist by phoning this helpline

Cheers

A

[Bermuda1]

Depends which type you have and why. Here is some info. nlm.nih.gov/medlineplus/enc...

[Alvess123 in reply to Bermuda1]

thank you, i have looked at all the info i can find on the web, i was hoping to find somebody who has the same as me, Type 2 and see what treatment they are on, or even if they have been offered any.

Cheers

a

[Bermuda1]

Have you tried these. I assume you are UK based. vasculitis.org.uk/about-vas...

[Bermuda1]

Here is a facebook group , it is a closed group. facebook.com/groups/3183046...

[Alvess123]

thank you, I have talked to vasculitis uk,on the helpline. They suggested a doctor who specialises in Cryo who practises at the same hospital i am using so i am waiting for an appointment . Am not on Facebook.

cheers

a