u/EyeArtistic5

I was diagnosed with ET this year. Jak2v617f confirmed with BMB. Low mutation burden, but 50% of bone marrow was overproducing platelets (if I understand correctly).

I am tired of feeling tired, having night sweats, dizziness, and itching.

I have other issues in my brain and optic nerve that make me more likely to have a stroke/ocular stroke.

I meet with my MPN specialist again this month to discuss interferons.

Is there a chance my symptom could improve on interferons? I am 50 and active. I eat a low saturated fat, Mediterranean diet and am exercising even more since diagnosis.

I was diagnosed with jak2v617f ET this year (confirmed though BMB).

Off and on I experience dizziness and limb numbness on one side. This occurs maybe a few times a month. It’s bad enough to have to stay home.

Other times, I experience intermittent, electric like nerve pain on the temples of my forehead that will last for a week or two.

I am only taking one baby aspirin a day, along with ezetimibe and Rosuvastatin.

Are these symptoms just normal ET stuff or something I should contact my PCP or MPN specialist with every time they happen?

What symptoms warrant a same day contact to the doctor?

50/f ET Jak2V617f, aspirin currently

I recently developed intermittent nerve type pain on both sides of my forehead (without touching it, and the same on my scalp when touching.

I took one Advil the other day for a headache and it improved dramatically (headache and nerve pain).

I meet with my mpn nurse next month to discuss interferons. Has anyone had these symptoms along with occasional dizziness and have them resolve with treatment?

I also had an MRI recently due to head injury and it showed slight white matter changes and decreased volume. I read that these changes can happen with age but also due to micro clots in tiny vessels in the brain (which can be more common with ET). Could starting an interferon reduce progression risk?

Any thoughts on which interferon has fewer side effects, or is it individual for each person.

I was diagnosed with Jak2 ET this year. 50F

I just had a BMB (awaiting results) and asked for my Von Willebrand Factor Activity lab to be redone because it was in the 50s last month, but I was on day 1 of my cycle. The test done last week showed 44%

What does this mean?

I am currently taking 1 baby aspirin per day.

I had asked about Pegasus, but was told there is a shortage, so the discussion would need to wait until there was no longer a shortage.