Is a BMB always the only way to diagnose an MPN? - MPN Voice

MPN Voice

6,733 members8,984 posts

Is a BMB always the only way to diagnose an MPN?

Sarahjane100
Sarahjane100

I have been seeing a heamotoligist at the hospital for over a year now, and still have no diagnosis. I have had a BMB in July which was negative for any MPN. My heamotoligist is baffled by my results, as everything pointed to ET. My platelets have been high consistently since 2013. Between 490 and 590. I faint on a fairly regular basis and that seems to be my only symptom. I have had so many blood tests, but no diagnosis! Does anyone have any idea what may be wrong with me? I am so frustrated! Sarahjane. X

7 Replies

Hi. You must be very frustrated with not knowing. First, I’ve personally never heard of fainting being a sign of an MPN. But did your doctor do tests for genetic mutations often found in MPNs? If not, that would be my choice to try & figure it out. Take care. Katie

Thank you for your reply Katie. I am triple negative for all gene mutations. They were the first blood tests done a year ago. I see my heamotoligist again on the 20th of this month, so hopefully get some idea of what happens next! X

I was diagnosed ‘officially’ in 2008. Was told the BMB was the only definite way, even tho I was being treated for ET since 2006. The BMB was uncomfortable but not too bad so don’t worry too much. Had hip & back ache for a couple of days so booked 2 days off work & rested. xx

If my platelets were between 490 and 590, I would very happy. I was diagnosed with ET JAK2+ on the basis of genetic testing, nobody mentioned BMB and I was blissfully ignorant of it. I don't want one now.

The fact of the matter is, I just want a diagnosis! My platelets were high over a long period of time , and I was referred to hospital to find out why! But still no explanation or diagnosis. It's not inflammatory or infection, so now just in the dark. Frustrating to say the very least.

I’m still undiagnosed as well. Inconclusive biopsy, triple negative, but they still presume a diagnosis of ET because they can find nothing else. My counts have been high since at least 2006. Currently around 750k. I have lots of symptoms but no answers. I completely understand just wanting answers. It’s extremely frustrating!

Thank you Chelsea! Your reply to my post has made me feel I'm not the only one who is in this position. I still think it must be ET myself, and my heamotoligist must think so, because he mentioned last time I saw him, that if my platelets are still high on the 20th of this month, he would want me to have another BMB. So will let you know how things go! Happy Christmas to you. xxxx

You may also like...