Appointment

[De12]

Hi everyone,

I received a call late this evening from my haematology secretary. My results came back today and I have a follow-up appointment on next Wednesday.

I was JAK 2 negative in 2013.

What if things are still negative? What do I do?

Plated elevated since 2009, and low b12 this year and all other test normal, gamma are a liitle high but nothing to worry about.

At the moment I'm feeling very tired and I am taking b12 supplements for passed three weeks, I was feeling okay but since Saturday, I am feeling tired again with mild pain in tummy (sides?) low grade fever back too but I know these will easy off and come back.

I'd be grateful if you could guide me on questions to ask please.

Many thanks

D

[cmc_ufl]

How high are your platelets, and how high have they been over the years?

Since you just mention “JAK2 negative”, my guess is that you were not tested for the other mutations (CALR or MPL) back then, likely because these were not even discovered until 2013. Today, it is routine practice to test for all 3 mutations for MPN diagnosis.

Do you know what they tested you for this time?

[De12 in reply to cmc_ufl]

Hi cmc_ufl

I was test for the other two mutants calr, and I can't remember the other one.

My platelets are between 550 to 700 and they flucate but never have went back to normal range since 2009.

Thanks for your reply

D

[hunter5582]

As cmf_ufl noted, you would want to be sure to find out the status of all of the driver mutations, JAK2v617f/JAK2 exon 12, CALR and MPL. If there is a significant change in your MPN status (including all blood cell types), then perhaps a MPN Myeloid Panel to evaluate non-driver mutations would be indicated as well.

If you have not already consulted a MPN Specialist rather than a regular hematologist, not would be the time to do so. mpnforum.com/list-hem./

Please do let us know how you get on,

[De12 in reply to hunter5582]

Hi Hunter,

Thanks for your reply, will update next Wednesday.

I will ask about the Myeloid panel.

Many thanks

D

[Wyebird]

Try not to think bad thoughts. Have you had your magnesium and vit D checked recently.

Do mention all these symptoms to your heamo. Xx