What's wrong with me?

[Jewels707]

Hi everyone. My problem is I'm triple ney, had bone marrow biopsy which did not indicate an MPL, however I was expecting to be discharged from haematologist but at my appointment he's said "it's not that simple." Apparently my bone marrow is too "busy" with cellularity at 65% when it should be 30-35% for my age. Also my platelets continue to rise steadily, and are at 525 ATM. I'm having a full body catscan soon, and more bloods done, if that's clear, I'll be discharged from haematologist. I'm very worried that basically, they don't know what's wrong. He did say there's something possibly bubbling beneath the surface and they will do bloods every few months. Help anyone had similar? Any words of advice would be greatly appreciated thank you.

[hunter5582]

I would not assume that you should be discharged from hematology at this point. If they can find no evidence of a reason for the elevated blood cell levels and hypercellularity, then it may be that you have a triple-negative MPN. Suggest that you get a second opinion from a MPN Specialist. mpnforum.com/list-hem./

[Mazcd Partner MPNVoice]

hello Jewels707, I am also triple negative ET, I was diagnosed in 2003 by bone marrow biopsy, though back then the result only indicated ET not that I was triple negative, this came a few years later from a blood test to look for any of the mutations - JAKII, CALR and MPL.

I can understand you are worried that your haematologist is unsure at the moment as to what is causing your bone marrow to be too busy, but it is good that he is going to carry out further tests and monitor you regularly. And I agree with the advice you have been given by Aime to write down questions and take them with you to your next appointment as this does help, and if you can, take someone with you. I would also advise that you express your concerns to your haematologist, tell him how you are feeling.

I hope all goes well for you with the scan and further appointments. Best wishes, Maz

[Jewels707 in reply to Mazcd]

Thanks Maz. Although I am triple negative, I was told I don't have et (yet?) But my platelets continue to rise as well as the hyper cellularity of bone marrow. It's all a bit worrying when even they don't know what is wrong or what to call it, therefore they can't treat it. J

[MAP44]

Hi Jewels707,

So sorry to hear you are going through this difficult time.

Sadly only the Doctors can really tell you what’s happening, but we are all here once they give you the news.

Anxiety is always a difficult addition to any potential diagnosis, and I mean ANY diagnosis. Try NOT to get a head of your medical issues until you really know what you are dealing with. It is always easier to defeat the bad guy when you know their weakness. As difficult as it sounds start with baby steps and make positive changes to your diet and find someone to talk too. Professional or a friend that support is always needed.

Goggling different diseases will only heighten your stress so as difficult as it sounds go outside for a walk, listen to a audiobook, watch your favourite movie. Do things each day that bring your brain back into your body. Many MPNers have several health issues, many have no symptoms and some are in clinical remission.😀. We are here all the time offering our experiences and tweaks to support and motivate each other.

I hope they find you have an unknown infection and everything returns to normal quickly for you.

We cannot offer medical advice as we are just an amazing group of patients holding each other up with love and support.

Please tell us know what you find out. ❤️❤️