I recently posted about my haematologist adding at the end of a letter to my GP that I am “likely to represent a mild early myeloproliferative disorder.”
Since then, I have seen a private haematologist that echoed his conclusions after doing her own set of tests.
Today was the first time I went back to see the NHS haematologist who is now saying he believes its not an Myeloproliferative neoplasms (MPN), but a genetic disorder (G6PD), however, the private haematologist already knew I had the disorder and ruled that out as a reason for my high platelets and other blood test results. In honesty, I felt fobbed off by the NHS haematologist today as if he just wanted me off his caseload.
After the appointment he ordered another set of blood tests that show my platelets were on the rise again (556) and my RBC has dropped below norm to 3.68. This, along with my previous set of results is not explained away by my G6PD so I wanted to ask what the best thing to do is in this instance? My kappa light chains and IG A and M are high, as well as an increased polyclonal gamma globulin which is all linked to myeloma however, the dr seems unbothered but also won’t explain why, perhaps because I am only 28?
I am at a complete loss and my daughter has just begun her 6 week break, I have no energy and all of this is just worrying me to no end. If you have read this far thank you, if you have any advice please let me know!
Hi @May I did read your post to the end.
If you wish to you could ask your NHS hospitals PALS for assistance (Patients Advice and Liaison Service) perhaps you might request another NHS opinion.
Please do stress your lack of energy and any other symptoms you might have, any medications you might be on and also any pre-existing medical issues you might have.
You might be intending to re-see your private haematologist.
Worrying, although natural of course, can be exhausting.
Look after yourselves and be kind to yourselves during the school holidays.
Hi @May. I also read to the end and can feel the anxiety this is causing you. @Erica has given some good advice and PALS can hopefully help.
Please let us know how you get on X
Hi May
Not knowing much about what is wrong with you is difficult and blood disorders seems very complicated and varied. I was diagnosed with Myelodysplastic syndrome (MDS) in December 22 and have been on a journey of discovery and investigation ever since. As they say “knowledge is power”, not sure we can be very powerful with this illness but it can sometimes help our understanding. . Everyone has their own way of dealing with things.
However, maybe you could ask for a second NHS opinion? Your consultant, or GP, could then refer you to another haematologist for that opinion. Maybe do a bit of research first to find out who else is near enough for you to see, that’s when you have time from looking after your family. Good luck
Hi Helen, thank you for your advice. I hope you’re finding some equilibrium since your diagnosis. I will take on board trying to find power in knowledge and not just give up as I have been tempted to do recently. Thanks again for replying, all the best
Hi @May the main thing is that you really look after yourself and be very kind to yourself and keep posting.
Also don’t forget the Blood Cancer UK support line is always there for you if you would like to speak to someone on 0808 2080 888
Good aftenoon @Nichola75, thanks for asking, I am okay how are you? I have a haematology appointment booked in for Monday morning so hopefully I can get some questions answered then - or at least find the courage to advocate for more care fingers crossed! Hope you are having a lovely weekend x
Hi @May. I’m doing ok thanks. Check up at the end of this month after July one cancelled. Always causes a bit of anxiety.
Yes - Monday will hopefully get those questions answered. Please let us know how the appointment goes X
Hi @May I will be thinking of you on Monday morning and yes, you have a right to get all your questions answered.
Just think of us all with you at the appointment helping you with your courage.
Fingers and toes crossed for you, please do let us know how you get on.
Perhaps do some nice things this weekend, you deserve it. Be kind to yourself
Sorry to hear your appointment was cancelled, fingers crossed it’s all good news though. I know well wishes do not really help the anxiety but hopefully you feel the support through the screen! I’ll let you know about tomorrow, I have been ill all day after pushing myself to attend my daughters friends bday party yesterday so let me be a lesson to be kind to yourself! x
This message really made my day thank you, I will go in with my list and not leave until I have some clarity! Hope you had a lovely Sunday and a great week, you deserve it.
@May I can go to something socially, which I enjoy, I don’t have to do anything there but when I get home or the next day I am wiped out. Now I way up the pros and cons and sometimes I go and pay the price and sometimes I don’t.
Yes, please do let us know how you get on at your appointment,
Be kind to yourself
I completely empathise with that statement! It’s so tricky to have to pick and choose and then live with the consequence of going or not going to an event, I hope you’re circle are really understanding and kind. The appointment went ‘well’, the dr agreed it still probably is a myeloproliferative disorder so I am officially still on watch and wait and have another appointment booked in with him in November. It feels odd to be jubilant about that, but I was so worried I was going to get lost in the GP referral system again! Hope all is well on your end
Yes, @May isn’t it interesting with our thoughts and emotions how they are conflicting and oscillating and certainly not logical.
I also like to have the next appointment booked, as you say it is good to feel and know that you are not lost in the system.
Look after yourself and please keep posting