General MPN

[Tocat]

Could someone help me in explaining what general MPN is?

[Mazcd Partner MPNVoice]

hello Tocat, the information on our website will help you

mpnvoice.org.uk/about-mpns/

Have you been diagnosed with a MPN, or having tests to determine whether or not you have one?

Regards, Maz

[Tocat in reply to Mazcd]

Was told last year I probably had MPN Et and was waiting for jak2 result. Which I was told 3 weeks later I had jak2 and was MPN Et . Asked for information on MPN on three occasions over the last three months, only for nurse to say awaiting more blood results to come back. she tells me I have a general MPN but can’t find inform on that. Thank you for your quick reply

[hunter5582 in reply to Tocat]

Assuming it is only your platelets that are elevated, it sounds like they are thinking it is ET, but are waiting to get the results to determine that is is not PV or Pre-MF. Myeloproliferative disease, unspecified - is a catch-all diagnosis for when they are not sure yet what form of MPN you have. If you access the record you may see the ICD 10 code 47.1 - the code used to designate this (aka Chronic myeloproliferative disease).

I am not sure why it would take so long to get an answer to your MPN Status. It usually can be done in a few weeks. Sometimes needs a BMB to determine, but not always. Would be sure to push for answers ASAP. Definitely arrange to see a MPN Specialist as most hematologists do not have the KSAs to provide optimal care for MPNs. Here is a list. mpnforum.com/list-hem./

While you are waiting, here are a couple of resources you may find helpful.

legeforeningen.no/contentas...

mpnjournal.org/how-i-treat-...

Hope that helps.

[Tocat in reply to hunter5582]

Thanks Hunter. Just received this morning letter for more blood test and an appointment for a different consultant for next month. I feel I’m not dealing with MPN specialist. Consultant last year said that she was 90% sure I had MPN Et . Once jak2 result came back (which it did) I had ET. I have done all the chasing on the phone. I thought about a second opinion but I don’t have a diagnosis after 5 months. Thank you Hunter and Maz for your help. Regards

[hunter5582 in reply to Tocat]

Definitely be sure to get a MPN Specialist on your care team. It does make a difference to the quality of your care.