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Blackouts prior to being diagnosed with jak2 mutation and ET
Hi, I have the Jak2 mutation and ET. Prior to my diagnosis from my early 20s to my late 40s I'm now 64 , I had random blackouts (about 15 or so) that would last for a couple of minutes. Had numerous tests to see what caused the blackouts but nothing usual showed up, and was told it was something I would have to live with. Was wondering if anyone else with the Jak2 mutation and ET had experienced blackouts prior to their diagnosis. Would be interesting to know if there were some common symptoms/medical events that happened to people with the Jak2 mutation and ET prior to diagnosis.
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Hi @virginiafizz That would be an interesting correlation to see if earlier experiences of blackouts had any connection with the ET diagnosis later in life. But that may be one mystery where you’ll never know the answer. You mentioned these were before your diagnosis. Did they continue after being diagnosed with ET?
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1 ReactionI had visual migraines much of my adult life. I also had high platelets for those decades, but no one knew for sure if the two were connected. When I neared 65 I was diagnosed with PV, and commenced treatment with Besremi. During the first year, I had two episodes of very brief blackout. In one case I was concentrating on a plot twist in a movie when curtains seemed to close on my vision. I gripped my seat in panic, and the "curtains" opened again. Many months later I was driving in the country when I had a similar closing of vision. Luckily it was also brief. Doctors said these were variations on the migraine auras. I'm not so sure. Since the medicine has brought my platelets and HCT into line, my migraines have virtually disappeared. Thankfully, no more mini blackouts have happened either.
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3 Reactions@loribmt Hi, no blackouts since I started on low dose aspirin 13ish years ago.
I'm 78, have ET with Jak2 I've never blacked out. I actually did not know I had it until my doctor sent me to Oncologist. Ive had it for 12 years. Hope you are feeling better.
Hi, the blackouts are hopefully a thing of the past. I'm trying to gather information about Jak2 and ET triggers. I was told they only effect a few people and it's not passed down from generation to generation. Little is known about them. So feel there must be some trigger we have in common that causes us to get Jak2 mutation and ET.