← Return to Anyone living with Essential Thrombocythemia with JAK2?
DiscussionAnyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 20 hours ago | Replies (229)Comment receiving replies
Replies to "Hello all, Glad to have found this group. I am Alisa, a 59 year old female..."
@alisam I think it is useful to get a second opinion if you feel unsure about the diagnosis. I am ET triple negative and wanted to hear another point of view. I learned the diagnosis can vary on the details, because interpretation of bone marrow morphology is somewhat subjective. Everyone experiences the disease in their own way. A person can have very high platelets and experience few or no symptoms. Others can start to feel symptoms at a lower level. I would say I felt them before my platelets were out of normal range. Try not to worry too much, for most people the disease is manageable with monitoring and care.
Connect

How awful that you've struggled with migraines for 20 years.
Lots of us with ET do have headaches. Mine can be head-splitting. As it's brought down my platelet count, HU has really helped with that.
Migraines are to headaches as mountains are to molehills, though. To me it makes sense that thickened blood could be a contributor.
And our platelet-heavy blood does make us more vulnerable to strokes and blood clots.
To have varying platelet counts is quite normal. Don't worry about any particular number.
Every aspirin, every HU capsule you take is helping you, alisam.
Wonder if you saw the recent New York Times article on migraines? Not sure if this link will work . . .
https://www.nytimes.com/2025/10/29/opinion/headache-migraine-science-research.html