MPN scoring booklet

[lizzziep]

I’ve been sent this booklet today to record my symptoms , after my diagnosis of pre-mf. I’m going to try to put 3 pictures of it on. My appointment isn’t until next month so plenty of time to fill it in.

[Cja1956]

That’s great. I wonder how I can get one.

[friendofpiglet in reply to Cja1956]

You can download it from here:

novartis.com/uk-en/patients...

Scroll down until you get to the "MPN tracker form PDF" button

[Cja1956 in reply to friendofpiglet]

Thank you.

[KyleeR]

This is amazing - thank you so much for sharing!

[Leighcox85]

everyone should have one of these did you receive the folder and alert cards I have do one before every appointment it’s helpful for them to monitor your symptoms to see how well you are coping and if you need medication if your on meds then helps to see how well your responding just try to be as honest as possible 10 being absolutely unbearable and one being next to nothing good luck sweet iam sorry you had join our club it’s a good one with lots of supportive people that have great knowledge but it’s one you never really want join xx

[lizzziep in reply to Leighcox85]

It’s the first time I’ve had anything in over 13 years since being diagnosed with ET! No folder or alert cards. I haven’t seen a doctor face to face for over 3 years. The doctor I will actually be seeing in person next month is a new one, haven’t seen them before at all. I got a message passed on to me from them via the specialist nurse that my bmb results suggest my ET is changing to pre mf and that I would be sent further information through the post, the booklet is all I’ve had so far.

[Leighcox85]

that’s awful when I was diagnosed with mylefibrosis I got a folder than a lot of information about my condition but it had sections for et and pv to it had a medication passport so you can write down everything you take to make it easier if you see multiple doctors you do a symptom checker once a week and take them with you I assumed everybody got the same I have alert cards for my rux and my blood thinners to with my doctors contact details I can’t believe they just left you for so long that’s really bad what hospital are you with if you don’t mind me asking

[lizzziep]

Rotherham, South Yorkshire. Obviously different hospitals do things differently. With the NHS it’s the luck of the draw.