Jak2 Detected, Healthy otherwise, What's next?

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

Hi Lori

My sincere apologies to you, I feel that I have upset you rather than you have upset me! Just the term chronic confused me, possibly all the doubts I have had about myself & my condition just came to a head. A build up of uncertainty since my PV diagnosis seemed to have reached a climax. Only for people like you who have given up your precious time as Volunteers, where would we be...completely in the dark. I have saved the very valuable links, will go through them in detail.
Thank you so much again, it is extremely helpful to link up with people with the same diagnosis, so I have reverted back to the positive attitude I had just adopted!! Bless you for all your help.
Mags 17

Hi @mags17 I think we need a hug. ☺️ I just felt so sad that I upset you and certainly never intended to do so.
Truly, I understand the vulnerability we take on when we get a diagnosis. It can leave us feeling in limbo or waiting for the other shoe to drop. As humans we have the ability to accept, adapt and move on…but, there’s always that underlying uncertainty that can bubble to the surface every once in a while and then we ‘gotta blow’. 🙃

It’s important to vent or have that pressure relief because to continually suppress things isn’t healthy either. But conversely, it’s even more important to not dwell on the pesky ‘what ifs’. Change that to “What if everything goes right?” Or, If/then…If something changes, then meet that obstacle head on and take it from there. But to worry about anything in the future is just wasted time.

I’m so relieved you’ve gotten back to the positive side of life again! It’s a much happier place. I have to share one of my favorite quotes with you. It was a turning point in my life almost 40 years ago.

“ I, not events, have the power to make me happy or unhappy today. I can choose which it will be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it!” Groucho Marx

I was diagnosed around 2 1/2 years ago and agree that blood results along with JAK2 confirmation normally is enough to positively diagnose PV..

I think everyone’s journey with this disease is different with many different symptoms and need of care. One needs to trust the Dr they are seeing, but keep an open mind to treatments needed. I research all the time and have found that new treatments are being discovered everyday. I get up everyday and carry on the same as before I was diagnosed with some limitations. Listen to your body.Now remember, we all have different symptoms that are at different levels of severity, so don’t dwell on what you need to, but stay informed and ask alot of questions. Live your life to its fullest everyday, because whether you have a disease or not, non of us knows how much time we have. Stay informed.

I was diagnosed in June with PV at 48. Since, I’ve noticed that my body has a difficult time settling down to sleep. My body just seems restless. I wake up more often in the night and have a hard time sometimes getting back to sleep. I’m also starting to go through menopause so don’t know if the poor sleeping is because of that. I’m hot, and can never get comfortable. I was told I have some arthritis in my left hip that bothers me all the time, again not sure if any and all are related to one another or are separate issues. Just getting phlebotomies 1x month right now with no medication.

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?