Hi, I was just reading your thread and feel your anxiety. I was recently diagnosed with PV in January. I just turned 57 this summer and am a fit and healthy person so this was a shocker! Long story short, it took about 6 months to get the hydroxyurea dose right and I get phlebotomies about every 8-9 weeks. My numbers are good now and I’m hoping we got it under control. I wanted to let you know that it’s completely up to you to do the bone marrow biopsy. PV can be diagnosed with it. Your treatment will be the same with or without it .a My hemo/oncologist said
Unless there was a sign of something else, he was comfortable sparing me the bone marrow test. Please just do your research and you can make an informed decision. Some people need to have it for their own piece of mind and final confirmation of the disease and it is what ever makes YOU comfortable. Best of luck and things will get easier…

Hi there I have PV and jak 2 and am on hydroxy they have now got the right amount each day to control my bloods
I was wondering if anyone else with this condition has symptoms such as uncontrollable fidgety legs and tingling sensation s

Good morning, @lostmonk. Not sure how I missed this reply! Sorry for the delay… So, phew, the first hematology appointment out of the way. I know it can be anxiety producing but honestly, it’s just better to learn what you can and move forward from this point. It sounds like your doctor is very thorough in ordering these tests coming up.

There have been references to not needing a bone marrow biopsy and examination (bmbx) to diagnose PV. But there can be very pertinent information for your doctor from the study and analysis of your bone marrow and the peripheral blood samples taken at the time. It also provides an important baseline reference in case there are any changes in the future.
The procedure can be a little uncomfortable for some people. There is a local anesthetic used, however, if you get the option you might consider being sedated. You’re only out for a quick 10 minutes and then wake up with no knowledge of the event. Mention it to your doctor. (I’ve had 13 of these…3 without and 10 with…I like waking up to cookies and juice ☺️)

The ultrasound is easy peasy. The spleen can be affected by PV. It helps filter blood through the system. With PV there can be an abnormal amount of blood cells in the body, forcing the spleen to work harder, which can increase its size. If that’s the case your doctor may prescribe medication to help reduce the amount of blood cells.

You’re doing great with all of this! I know it can feel overwhelming with all the tests, not knowing much about the diagnosis, new terminology, etc.. You’ll get more comfortable as the newness wears off. I’ve gotten such an education by immersion over the few years with my leukemia journey. Our blood is incredibly complicated and I’m so fascinated by all of this…and what our bodies can handle and recover from! They were made to heal! Just, sometimes they need extra help to keep us healthy.

Scanxiety is what’s coming next for you…waiting for the results of all the tests. 🙃 But you already know the diagnosis. These tests are confirmation so that a comprehensive plan can be in place going forward.

As you can see, you’re not alone here in Connect. You’ve just acquired a new family and I’m the elderly auntie who is there with unsolicited advice the drop of the hat…LOL.
Will you let me know when your tests are coming up?