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Diagnosed just in May 2020 with PV. All my counts, Hematcrit, WBC's & Platelets are in good range. Recently developed intermittently ringing in my ears. Anyone else have this & is there any treatment for it you've found?
My Hema said I could do it in their office. I’ve heard it can cause iron deficiency, anemia, loss of nutrients.
But it’s gotta be less toxic than an Rx, right? Seems all options have pros and cons? Some better and worse than others.
Thought this could be a good place to start for if and when I’m told baby aspirin isn’t enough.
New to all this mess and just started baby aspirin Jan. 31 but don’t even want to be on that.
🤷🏻‍♀️
Forgot to include the 20 year longevity study. The Anagrelide < HU study was separate from the phleb + aspirin < HU < interferon study.
Hi Pat. Causation is difficult. I have had a sensitive stomach for years, long before ET was diagnosed in 2022. I think it comes from being a high-performing but anxious person. For me, a nighttime… read more
Thank you for the clarification. My Hematologist is not responding to my e-mails. I have to call her office tomorrow to follow up. I don’t understand why they can’t just respond. Usually they respond… read more
Yes, I definitely have memory issues!! I'm afraid it's from the ET itself or the HU. I feel so self-conscious when I'm talking to someone + I forget a word or 2, or even forget what I'm talking… read more
Hello from Los Angeles. I've been dealing with Cal R mutation ET since 2020
I'll add: If it's a small itchy spot, it helps me to put on anti-itch cream or cortisone cream and cover the spot with a… read more
I have ET and my mom had Mylodysplastic. I’m thinking about my children’s future
My mother’s brother died of leukemia and one of her sisters has leukemia. I think they both were CLL
Mum is one of 12 kids. My uncle died 15 years ago. My aunty said she had chemo treatment about 7… read more
Blacking out when standing too quickly sounds more like low blood pressure to me. It takes a minute for your blood pressure to stabilize when you stand quickly. Did you know that giraffes have the… read more
Does it have an odor
I’m new to the site and just received positive JAK2 mutation results - discovered via a high platelet count at my regular annual physical. I’m in my mid-60s, in excellent health other than high platelet levels (800s), and all other blood levels and markers are normal and I had no symptoms. My hematologist suspects ET, but I will meet with him next week for confirmation & a full consultation and review of treatment options. The only other remarkable issue I’ve had over the past few years are… read more
Dear MJGee
I experienced an ocular migraine the day I suffered a mild heartache in November of 2017 which led to my diagnosis of ET Jak2+. Since, I experience about 6 a year. I also, started with… read more
