No diagnosis yet

Hello all. I have been waiting for a diagnosis for over 2.5 years and am starting to feel very down about it really. I have had a high platelet count for a very long time, but when it was first picked up on over 10 years ago further tests were stopped. It then got noticed again in a blood test 2.5 years ago and since then I’ve had lots of tests including a bone marrow biopsy, but I still don’t have a clear diagnosis. My symptoms aren’t clear as I seem to have some ET symptoms, but also a PV mutation so my consultant isn’t very sure what to do. I think I am just a bit down about it all as I’d like to know one way or the other especially due to the current covid situation. I hope this post is appropriate to share.

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Hi @nict , off course it’s ok to share. Wow, that’s so frustrating. It’s so hard not knowing what is wrong and it would drive me crazy! It also sends me into google mode, trying to work it out for myself which isn’t healthy! So, what are the next steps. Are you happy with the consultant you have at the moment? It might be worth giving the support line a ring? In the meantime please take care of yourself and keep posting. We are all here to listen and understand how difficult this is for you x

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Of course your post is appropriate @nict.
Waiting so long for any diagnosis must take a toll on you emotionally and I am not surprised that you feel a bit down as you put it.
I find it helps to write down everything I want to ask before my appointments, this might include my anxieties and fears, symptoms, thoughts, feelings practicalities etc. Consultants are there to make diagnosis or to advise the way forward.
What is the next step for you?
We are here to support each other and you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
I always think that the not knowing is the worst feeling.
Take care and stay safe.
Please let us know how you get on.

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I can only imagine the feelings you’ve experienced having to contend with these worries at the same time as the Covid anxiety @nict . i’d also advise reviewing your medical team options too but do talk to the support line and don’t fail to check in here if want to unload. Hope things get better for you.

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Thank you for your kind response. I’m not sure what to think about my consultant really which makes it harder. A test was meant to be arranged almost a year ago which hasn’t been done and I fear it’s because it’s been forgotten. I’ve decided I’m going to contact my gp this week just to talk it through and get their thoughts on what to do next. My consultant seems to come from the view that as I’m young (I’m 44) that we have time to wait and see. Hopefully speaking to my gp will help and get things moving on a bit. Thank you for the support, it’s appreciated and good to voice my concerns and feel that I’m not alone.

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Thank you for your kind response. It’s most appreciated to be able to voice my concerns and get the support to know I’m not on my own. I’m going to talk to my gp and see what I can do next to move it along. Hopefully they can suggest something. I’ll bear the support line in mind aswell.

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Thank you Franko, it’s appreciated. I’ll bear the support line in mind and hopefully things will start to get better soon and I’ll have some answers.

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Hi @nict, talking to your GP seems a good plan to me and chasing up that test.
You are certainly not alone on here.
Be kind to yourself and please let us know how you get on.

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Definitely have the conversation. Let us know how you get on x

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Hi @nict it’s so understandable you’re feeling down about this, it must be so frustrating for you. May I ask how you’re feeling today?

Do you know what your consultant is doing to try and clarify things and has he/she given you any information around any next steps which may need to be taken to investigate further? Has your consultant discussed your clinical circumstances with a multi disciplinary team?
Also, just in case it’s something you want to look into, there’s some information here around second opinions - NHS patients' rights - Citizens Advice. As it explains on this page -

You may wish to get a second opinion after seeing a consultant. You will need to request this from the consultant, who may arrange for you to see someone else. If the consultant does not agree, you could ask your GP to help.

If you want to talk anything through, please don’t hesitate to give us a call on the support line.

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Thanks for your response Alice. I’m ok thanks, I just feel the same most of the time to be honest as I’m not really sure what to think. I don’t know much about what my consultant is doing as she mentions things in passing more as ideas on what to do. She was meant to be organising a test almost a year ago which hasn’t been done yet. When I last spoke to her in November she mentioned it as if she’d forgotten to arrange it so I have the impression that she either doesn’t know what to do or has just forgotten again as it’s now March. She says to me that as I’m young (I’m 44) that she thinks we can take time with it. I have told her many times that I’d like an answer which she acknowledges but she still isn’t really pushing. She has also mentioned that i may not ever get an answer and that she’ll discharge me back to my gp and I’ll just have a blood test yearly. My worry with that is how will my gp know what to be looking for as that’s how I ended up being referred in the first place. I appreciate that not all diagnosis is easy, but there must be something wrong otherwise it wouldn’t have been flagged. I’m going to talk to my gp and raise that I’m not very happy with being left waiting and see what they say. Not sure if it will do any good but I don’t really know what else I can do.

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Hi @nict, I am under my GP now and have 6 mthly blood tests. I was diagnosed with another blood cancer 17 yrs ago and I have never had treatment. It is called ‘active monitoring’ or ‘watch and wait’.
My GP monitors them and I would be fast tracked back to my consultant if something was amiss or my symptoms change.
Personally and it is a personal thing, I request copies of my blood tests and do not really know what I am looking for, they fluctuate and some are never within range, some stay in range and others oscillate in and out of range.
I started plotting them on graph paper but it looked like a toilet roll in the end !!!
I always thought you got a diagnosis and then were immediately treated and recovered, but unfortunately some conditions often aren’t like that
@Alice_BloodCancerUK has given you good information as well.
Take care and keep us updated.

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If you are in a position to pay for a private consultation I would do that. My high platelets were picked up in a routine blood test I had for my scleroderma. Luckily I was diagnose quickly with ET. When I first developed scleroderma symptoms I didnt get a satisfactory diagnosis from hospital so I paid privately I was then able to transfer to NHS for treatment.

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Sound advice from Erica. I only ever get telephone consultations these days so don’t actually get to see any blood test results which I find slightly unsettling.

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Hello @nict I hope you’re doing okay? Have you managed to speak to your GP?

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Totally understandable that you find this unsettling @Franko. Have you spoken to your consultant about your feelings around this? Hope you’re doing okay.

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Hi @Franko I always ask for copies of my blood tests and they are in an envelope in my GP or hospital for me to pick up at a quiet time. It is what my original GP called taking responsibility for my condition.

I’m the same as you @Erica . I request everything every few months

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