Jak 2 Negative 😕 confused 0klahoma, USA Bone marrow biopsy?? 😨 told i was diagnosed with Polycythemia Vera 2 years prior.. 😕

[Toshabeatthis]

It's been awhile since i wrote a brief post or concern. Having a bone marrow biopsy on the 8th January 2018.. Hard to believe 2 years since the day diagnosed. So many different things has happened since. More and many more test to get it all figured out. Hope that this New Year 4 all of us bring new answers to this craziness that goes with feeling alone. Was told Jak 2 negative? Confused. Night sweats, awful bone pain, head aches a million things that now has consumed me. Body and symptoms progressing it seems at times on top of it all ill health all together. So lost but still trying to stay strong and faithful with our wise Doctor's to find a cure!! Merry X-mas all!!!

[Mazcd Partner MPNVoice]

Hi Tosha, hope all goes well for you with your bone marrow biopsy. It is very confusing trying to come to terms with the diagnosis, have you read the information on our website about PV

mpnvoice.org.uk/about-mpns/...

and coping with side effects etc

mpnvoice.org.uk/living-with...

hope this will help you. Best wishes, Maz

[Toshabeatthis in reply to Mazcd]

Ty for your kind response. Much more to learn and need more caring people like you and many others coping. I feel like my family as well is dealing also with my insanity of all this. But ty again so much for your concern. Happy Holidays!!

[Aime]

Hi Tosha, sorry to hear that you’re struggling with PV symptoms. Rest assured there are many on this forum who know exactly how you’re feeling. You will reach a point when you will feel more in control of your PV and not vice versa.

You have probably seen the advice for dealing with fatigue - keep hydrated, eat healthy, exercise when you can, rest if you have to. Night sweats are so exhausting on their own so try and rest another time if possible.

I hope your BMB goes well and you get your answers. I have PV and Jak2 negative so we share that in common too. Maz has pointed you in the direction of the MPN Voice website which holds trustworthy information which your family can also read to understand better what you are going through.

Keep in touch, take care, kindest regards Aime xx😺😺😀. Remember you are not alone.

[katiewalsh]

Hi Tosha, sorry to hear you’re having such a rough time. Hopefully after your BMP you’ll get some answers and maybe a medication that can help relieve your symptom burden. In the meantime, please know you have all of us to learn on or complain to or just ask for support from us. We’re one big mpn family and care a lot about each other. Hang in there. Katie

[clevemic]

Sorry to hear that you are struggling. I also was diagnosed with PV two years ago, and have just begun to feel that I am getting a grip on this disease. I am from Wisconsin, so I reached out to MPN Advocacy Group. Through that group, I was referred to a doctor who has made a huge difference in my overall well-being. I strongly recommend reaching out to them for guidance in finding a specialist in your area of the country.

Ann Brazeau, CEO

Direct line: 517-899-6889

[e-mail]

Ann took time to personally speak with me on the phone, and I can't speak highly enough about the doctor that she connected me with in Milwaukee. Best of luck to you!

[Notlikecandy1]

My husband is jak2 neg and had bone marrow biopsy and that's negative But still has htc 58 and hemoglobin 21. One doc still thinks he has pv. Butbi don't. No symptoms except high numbers. Doing weekly Phlibotmies and doc at Va wants to do another bmb. My husband's feeling fine. He smokes so I think thIs why high hct. Have u found out anything yet ?? Ours started August 2018. It's now June 2019. No answers except the negative results