Jak2 Testing

[Royalblue9]

Hi, I just wanted to share my experience being tested for Jak2 mutation. I was tested for multiple diseases after my first stroke in 2010. No one could figure out why I had thrown at least 4-5 clots into the rear of my brain. I was given TPA, flown by heli to Intensive Care, 5 days, Stroke ward, another 20. Only tests abnormal were the CBC's. And I had high blood pressure 200+/200+. I went from Dr to Dr, bc I had pain in my right thigh, (lol, forced stroke unit to x-ray, was like an animal, knawing on bone) I had stroke in 2013, that occluded my left vertebral artery. Saw hematologist, said blood counts not bad, did fish, balc, calr, and other test, all neg. Dec 2014, Right vertebral artery occluded by another stroke. No answer. In 2019, after 4th stroke, went back to Hema, tested for genetic disorders. Hematologist also Oncologist had special lab in FL that did their genetic tests. My Jak2 was neg.

One week later, at next visit, Hema tells me for some reason, hospital sent my blood work to their labs, one being a Molecular Genetic Lab in CA. And to his surprise, I was Jak2 Positive. I was then started on HU.

It took 3 tests, all done at different labs, for them to get a position, and turns out was accident, miscommunication bwt Dr office and hospitals labs. That lab tested to the 1%. Gives me great pause about blood testing for the avg peep.

[JaK2ET]

It sounds as though you have been very unlucky with the handling of your blood analyses. I hope that now the position is clear you are getting all the treatment and help you need.

[Royalblue9 in reply to JaK2ET]

Thanks for your reply! It's been a long road. Have been seeing local Onco, but not MPN specialist. Have now done a request to see both a Stroke and MPN specialist, just waiting to hear back from them. Hope it is going well for you!