BMB Negative - so next steps?

[Megabyte]

Feeling a bit strange - history so far :-

Dec - tried to give blood, been a donor for a long time, but got knocked back because haemoglobin was a “tad under”. So went to doctors and they run a full blood sample.

Jan - blood sample “lost” so went back and gave some more.

Feb - blood sample to test for gene mutation was stuck in Glasgow because the machine was malfunctioning.

Mar - GP called to say Haematologist consultant at local hospital wanted a chat “nothing serious” and not to worry.

Apr - met the consultant and he broke the news I had MPN ET but not sure about the gene mutation so taking more blood to test.

May - gene mutation sample came back negative so BMB organised to investigate further.

Today - phone consultation with news that BMB was negative on all tests, but platelet level still up around 550 so further investigation required as MPN unlikely but can’t be ruled out. CT mentioned to check spleen/liver.

Anyone any thoughts? Hate phone consultations btw

[PhilReade]

Hi I had a bone marrow test 2013 and one 2014 nothing shown but had my spleen removed in June 2014 they said was haemolytic anaemia I’d read up so much I thought I had P V I had lots problems after even though Haematolygist dismissed me for a 12 months appointment I suffered angina attack a haematoma then in august 2015 my GP referred me to a different Haematolygist who tested me jak 2 positive E T But they tested for that just off a blood test

My platelets was 975 at the time

[Megabyte in reply to PhilReade]

That’s been a rocky road for you - but glad you finally got a diagnosis - I guess I’ll just have to go with the flow as far the waiting game for me. I take it your platelets are under control now? Did you take hydroxycarbamide? I had geared myself up for that, but still just taking clopidogrel. My platelets are still mid 500s.

[PhilReade in reply to Megabyte]

Hi yes I’m on 1500 mg daily Hydroxycarbamide plus Apixiban my platelets are always round 450 now I take other medication to after few problems over last few years

Hope you get sorted if not get a second opinion

[hunter5582]

In the absence of a driver mutation and bone marrow morphology that indicates ET, that does sound consistent with some form of reactive thrombocytosis. (see WHO diagnostic criteria)mpnconnect.com/pdf/who-diag...

"Secondary thrombocytosis, also known as reactive thrombocytosis defined as an abnormally high platelet count due to underlying events, disease, or the use of certain medications. Secondary thrombocytosis is the more common type and is usually identified in routine laboratory results. Among individuals with thrombocytosis, 80% to 90% are known to have secondary thrombocytosis.[5] Reactive causes of thrombocytosis include transient processes such as acute blood loss, acute infection, or sustained forms of reactive thrombocytosis include iron deficiency, asplenia, cancer, chronic inflammatory, or infectious diseases. Secondary thrombocytosis (reactive thrombocytosis) is a laboratory anomaly that resolves when the underlying causative condition is addressed."

ncbi.nlm.nih.gov/books/NBK5...

It would be worth getting a send opinion from a MPN Specialist is there is not an obvious case of the thrombocytosis. I think you have seen this before, but just in case mpnforum.com/list-hem./ .

Hope you get answers soon.

[xxbzd]

How are you? Nice to meet you. I'm a Chinese and an MPN. I was also very negative et and MF 1, which made me feel frustrated and scared. May I ask what the doctor has to say about this?

[Megabyte in reply to xxbzd]

Hi - my haemotologist has decided to look at other reasons for my high platelets- including the fact that i also have arthritis so inflammation may be causing the problem. He's mentioned maybe a ct scan but considering putting me on steroids to lower the inflammation and see what knock on effect this will have on platelet count. Think its a "dont know" at the moment.

[cmc_ufl]

Hi there. Did they ever look at the morphology (shape, size) of your platelets on a blood smear? This is often a good way to differentiate MPNs from other causes. People with MPNs often have large form platelets, sometimes clumping together, whereas people with reactive causes do not.

[Megabyte]

I don’t know what they looked at actually, their response was negative to all MPN indicators - he said that apart from the number of platelets, my blood was “unremarkable”.