Hello, My platelet count is good, i was biopsy positive for Jak2. My hands and feet swell at night and i wake up with terrible tingling in my right hand and pain throughout my right arm. I also get rash on my face at night and my skin is burning and itchy, mostly at night.
My Hemotologist said that I am fine, and that none of the symptoms are from ET? I am at a loss, I k ow my platelets are low for ET, but I am told I definitely 100% have ET.
The symptoms you are experiencing are common with ET. It is not just about how many platelets there are. It is also about how the platelets behave and the microvascular issues that can result from the JAK2 mutation. In addition, the JAK2 mutations cause the overproduction of inflammatory cytokines, which is thought to cause many MPN symptoms.
You are not "fine" when experiencing symptoms like you report. While there may be other issues involved. given a JAK2 positive ET finding, it is logical to assume that known MPN symptoms are related to the MPN.
Based on what you report, it sounds like you need to consult with a MPN Specialist. Note that most doctors, including hematologists, have little experience with MPNs. It is vital to consult with a MPN expert doctor to ensure optimal care. Here is a list. mpnforum.com/tsr-the-list/
I have Jak2 positive ET last blood test showed I am anemic . I swell up on my feet. Have raynairs so fingers and toes nails are white. Sorry big toes nails are blackish as fungal infection .had that for years, looks toe nails too then they grow back and still infected. Foot dr. Said shouldn't happen but three times still have infections. I have tingling in hands and feet. Weird also in my ear lobs. Hands go red on the inside. I also feel so cold. But told all is okay. We just have different bodies.
Hi I am new and have been diagnosed with ET Jak2
ET JAK2 positive
ET diagnosis JAK2 positive 
ET JAK2+ is it invasive?
ET JAK2 + 
