How long does it take?

[john0084]

Hi everyone, how long did it take to get a diagnosis. I was given a letter on 20th July saying the probable diagnosis was polycythamia rubra Vera.. i have since have had weekly phebotmlys and take 1 hydroxy every other day

[Mazcd Partner MPNVoice]

Hi John, have you seen either a haematologist or specialist nurse since you received this letter? You should contact your haematologist and ask to see him/her or the nurse to have this diagnosis explained to you and why they have said probable. Kind regards, Maz

[john0084 in reply to Mazcd]

I see the haeumatologist every week but they seem hard to approach, next week I shall ask them about the probable diagnosis, many thanks for your help

[Mazcd Partner MPNVoice in reply to john0084]

you need to ask them so that you know exactly what you have. Maz

[john0084 in reply to Mazcd]

Will do, I'm sure he mentioned to me I have the jak2 gene but my minds a bit of a blur with all these venesections

[Mazcd Partner MPNVoice in reply to john0084]

Hi John, it's a good idea to write down your questions before you go to the clinic, that way you won't forget to ask something, and it helps your consultant and you to keep the consultation on track. And, take someone with you so that they can hear the answers and maybe ask questions. Maz

[redumbrella]

Hi John, Maz is correct the single most important thing is to always ask questions of your Haematologist otherwise you can be left worried and confused. Also by this I mean your Consultant Haemotologist, when I attend Clinic I am sometimes seen by an Intern, I had a very bad experience with one of these some years ago and left the Clinic very confused and unhappy. I know now that I should have requested or if necessary demanded to see the Consultant to clarify the situation. Nowadays if I am unsure about something or am worried I will always ask.

Kind Regards

Garry