Had "The Chat"😁 : Morning all. Had my "chat... - MPN Voice

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Had "The Chat"😁

nodmeister profile image
nodmeister
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Morning all. Had my "chat' yesterday with my haematologist and was absolutely gob-smacked... Nothing about "I don't know why that is" when I mentioned the fatigue, headaches etc. etc. I wasn't given the CALr test because I had my BMB before it was available as was another test, I can't remember what that one is. These are carried out on my samples at. Salisbury hospital . May need another BMP, oooohhh my favourite 😡!! Not the best way to endear themselves to us that procedure!!!! My count had also jumped up again to 754. Aaaggghhhh. Hope you all get lots of Easter Eggs from Easter Bunny 🐰

Nod

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nodmeister profile image
nodmeister
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AndyT profile image
AndyT

Sounds like you might want to get a second opinion - two BMBs and no CALR test sounds odd to me - my clinic always do JAK2 and CALR first now and BMB only if both those are negative. I had a BMB 13 years ago before the other tests started and they then gave me both of those tests as soon as they were available - I'm CALR +ve. Good luck..!

nodmeister profile image
nodmeister in reply to AndyT

ooops, actually left out the bit to say I'm having the Calr and the other one that I cannot remember and maybe another BMB. It's all the excitement of actually getting things moving at last.

sorry all😳 xx

crapaud profile image
crapaud in reply to AndyT

Well the order for me was:

Bone marrow smear sample from the sternum. Sample was not too good (later diagnosed with a form of MF)

BMB from hip area (we one we all love!!) - I've had 4 now in the last 2yrs, love them :-(

The CalR, JAK2 + other mutation tests were all conducted around the same time as the BMB.

Stiff upper lip and all that in order not to swipe the poor doctor who undertook the 1st BMB sample procedure (I later learnt that my wife had told the nurse that I was a 'real man' and only a very light local anaesthetic would be required - thanks honey!).

Take care

nodmeister profile image
nodmeister

please read after Andy's post for the bit that explains myself properly, not like a jibbering, excited kid!!!!!😁

crapaud profile image
crapaud

By the sound of it you are not too impressed by the Salisbury hospital haemo dept.

That worries me a bit since I will be coming over to the UK in the Salibury area and said to myself that at least in case of problems I could always fall back on them.

What do you think?

nodmeister profile image
nodmeister

I've never been, my consultant told me that's where the tests are carried out on bone marrow but as the tests were not available for mf first BMP if they do not still have any useable marrow left I'll need another one, just don't know yet. I cannot, therefore comment on theirs, or any other than my own, H. Dept.

Enjoy Salisbury....Nice Cathedral.

crapaud profile image
crapaud

Thanks nodmeister,

I lived near Salisbury for 14 yrs and went to Bishop Wordsworth School which looks out on the cathedral close - for me it was like my local parish church!!

Good luck with all your tests.

Gary

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