Don't know what to do!

[hall2]

Hello everyone. A few weeks ago I had some in depth blood tests done which say that I'm JAK2 negative and CALR 2 positive. I have been seeing haemo privately and he said he would arrange a BMB for me on NHS at local hospital and to phone his secretary if I didn't get an appointment in a couple of weeks. This was nearly two months ago. I've phoned secretary several times and still not heard anything. Platelet count has been steadily increasing. I feel as though I'm in Limbo. I've got booked holidays coming and wanted all this done with before going! I don't want to book another appointment with him that I'll have to pay for just to be told nothing!

[CommonDaisy]

You poor thing. It’s a horrible feeling just waiting in limbo!

Have you been started on any medication or even aspirin in the meantime?

How high are your platelets? Maybe you are low risk so they feel there is no rush for the BMB.

Still, it’s not fair of them to leave you in the dark. I would to heading down to the hospital to talk to someone and get that BMB booked in (if you’re not getting answers on the phone) if this is the next step you were told to take

Good luck!

[hall2 in reply to CommonDaisy]

I've moved into the higher risk category due to age and I take aspirin daily. I think I'll take your advice!

[jane13]

get onto your GP?

[socrates_8]

Hey Hall2...

I am not sure how old you are, (may not be too polite to ask), but may I anyways...? I myself am just about to become 59 in May. In 5 days I will celebrate my 2nd year w/ an MPN... (Post ET/MF)

I am also CALR+ Type 2. The BMB did help to classify whether I was ET or MF. However, I barely felt a thing during the procedure. Didn't really hurt much at all... So please do not be fearful of going through the motions etc...

As others have said above... Limbo sucks 'Big Time' but if you are not getting timely responses...

...Ask for copies of your blood work and head off to find another GP in order to try to move things along a tad.

Do keep an eye on those platelets because you don't want to allow them to become too high either... Because that could affect your holidays & travel plans.

Obviously, you need to follow your medical advice but perhaps some of the lovely people on here (MPN Voice), can direct you to a better GP option, depending on where you are located. I am afraid that I am not much help as I am in Sydney, Australia...

I am sure someone there might know a good GP closer near you. Perhaps try running it all by Maz... (website coordinator), she is amazing...

Best wishes, and I hope that it does not muck up your holidays too much.

Steve xo

[hall2 in reply to socrates_8]

Hi Steve thanks for your reply. I'm nearly 62 and live in the UK. I'm told the BMB is needed to ascertain whether I have ET or prefibrotic MF. It's the platelet count that worries me as while I'm in this limbo situation it's not being monitored!

[Ebot]

I think a little foot stamping is required! BMBs have happened pretty quickly for me - within a few weeks. I would also get back to the consultant and tell him you have heard nothing. E-mail can be good. Or try GP. BMBs never result in ‘nothing’. At the very least they provide a base line from which to track the disease into the future. Good luck!

[hall2]

Thanks for your reply. I have just emailed him via his secretary so hopefully something will come out of that!

[JSKly]

Hi Hall 2

I echo Jane and say go to your GP. I'm wondering why you have chosen to go privately. My experience with the NHS and our MPNs is generally excellent especially when your GP refers you to a specialist Hematologist.

[hall2 in reply to JSKly]

I started going private when I had access to a health insurance policy that my ex paid for and I suppose I just got into that groove. Nothing against NHS at all, its excellent! I've emailed the haemo via his secretary and if I don't get any joy I'll go to my GP. Haemo has said he's going to arrange BMB on NHS but it seems as though I've fallen through the net somewhere!

[JSKly in reply to hall2]

It sounds treally frustrating. I hope you get some joy soon. Have you telephoned?

[Mazcd Partner MPNVoice in reply to hall2]

Hi, make an appointment to see your GP as soon as you can and take a copy of the blood test results with you and discuss with your GP about being referred to see a haematologist in your local NHS hospital. Best wishes, Maz

[Wyebird]

You poor thing. Heamos are in short supply. Why don’t you see your GP but say you’ll see an nhs haemo anywhere on the country. Once you are on the system and attend a clinic you can get transferred to your local hospital or maybe one of your choice. I was also told going private for what we’ve got is costly as you will have to pay for all your bloods and treatment etc. That’s what I did. I eventually was too ill to go on holiday.

Good luck,

[hall2 in reply to Wyebird]

Hi thanks for your reply. I'm going to chase it up quite strongly as I don't want to become ill. I hope things have improved for you.

[hall2]

Thanks for your advice everyone. I've emailed the haemo and also followed this up with a phone call to his secretary who has said she will chase it again today! Let's hope. Failing that I will definitely go to GP.

[hall2]

Just found that applying a bit of pressure works! I've got appointment for BNB on 15 May!

[Wyebird]

Brilliant good luck