Result & diagnosis stresses

[Vicky_b]

Is it usual for it to be so difficult to get a diagnosis?

I had loads of blood tests including jak2 test & was booked a haematology apt for 2 weeks after. The jak2 wasnt back & i was told I'd need to go back in 4 weeks (which is next week)

I've rung the hospital today as I have not been sent an apt & was told the dr I saw has left & I hadn't been put on a new drs list. I have now been booked an apt & the 1st available one is 22nd may. I am so stressed about waiting so long. I just want to know whats happening & why I feel like I do.

Last time the dr said if jak2 was negative i would have a bone biopsy.

Are there no guidelines as to how long you have to be treated within?

Vicky x

[Aime]

Hi Vicky, i found it a very frustrating time when I was going through the tests before getting a diagnosis. My advice would be to phone again and politely insist that you get an appointment sooner as the stress of not knowing is making you ill and you should have been automatically transferred to the new list when the last doc left. Can your GP help?

When you do go for your appointment, go armed with all the questions you need answers to - it is the only way to get on top of your worries - and insist on answers you understand.

I’m not sure about guidelines on how quickly you have to be seen or about why you need a bone marrow biopsy or not as we are all individuals despite having the same disease.

Take care, make the call and keep in touch, kindest regards and E Hugs Aime xx😺

[jane13]

your GP might b able to help get u an earlier appt

[Hidden]

Have you had a diagnosis of which MPN you have? The genetic mutation you have is less important. A BMB will give the best indication of the state of your bone marrow and confirm diagnosis.

[Mazcd Partner MPNVoice]

Hi Vicky I am sorry to hear you have been waiting so long for your results, unfortunately there is no definitive time limit, it does not come under the 2 week rule. Maz

[Vicky_b]

Thankyou all. I saw my gp today & he is going to send a referral to Guys as my local hospital seems a nightmare!

[Vicky_b]

I have my appointment for Guys... its 6th August! So much for being seen sooner than my local hospital on 22nd May. Looks like I will just have to wait. Its all so frustratingly slow. I just want a diagnosis & to know what happens next 😕 x