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MPN Voice
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Red cell is the clincher

Hello everyone!

Now I'm at the end of the trail of the red cell!

I have very low epo.

Tomorrow I have the red cell mass test to see if I'm indeed proliferating red cells or if this is a fluctuating thing happening.

If I am, treatment right away,

If I am not, wait watch and see what happens next.

My spontaneous ruptures (they go red itchy then bruise) apparently are not MPN related.

Had ultra sound on my calf, thankfully no dvt but possible compartment syndrome. I think it's just swollen bc of whatever.

Today after drinking loads of water my hemocrit was an astounding 44!!! First time in a year it's been normal!!

I did drink a huge amount of water though.

Unsure what that means in the grander scheme of things. Showed Dr my photo of my very red body after shower.

He says it's really odd, you have all the signs just not the gene. So perhaps no pv.

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