Hello, my Mother has just been diagnosed with both EM and polycythemia Vera. I am just trying to gather some knowledge about all of this to help us both understand. She doesn't have an appointment until the end of next week, and that is with a hematologist, don't know if that is for EM or PV. Anyone ever heard of something like this? Thanks! Katie
Hi, sorry to hear that your mum’s been diagnosed with with conditions. I’ve not heard of PV before but until a few years ago I hadn’t heard of EM either. Sorry i haven’t got any information to help you but just wanted you to know that there is someone you can talk to if you wanted. I wish you and your mum well. Laura x
Ps have you looked to see if there is a bensfriends community for PV sufferers…?
Hi my dad has exacly the same, polycytemia and EM, i realy hope a good result for your mom.
Plz. keep me posted on your mom. I have PV & seeing hematologist for 4 months. I've had 3 phlebotomies for PV & the energy level is better. It hasn't affected my EM & I still have burning/pain in my feet. I go back nwxt wk & will address the EM a little more aggressively w/ him.
I have essential thrombocytosis and em....apparently they can be closely connected and polycythemia vera is in the category also. Dr's don't know why these condtions exist but only what to do for them (as much as they can that is). Tell your Mom I wish her well.
Thank you all for posting. I have been out of town and haven't updated at all. Nothing really to report. Mom went to a hemotologist 2 weeks ago and last week did a colonoscopy. The hemo. took blood and was interested that my Mom's iron levels were already deficiant. They are going to look into that and see if there is an explanation there. My mom was a nurse for many years and all the talk from him about genes is confusing even her. I believe she goes back next week. Thanks all!