Staying hydrated has helped with leg cramps and stiffness. However, it’s hard remembering to drink the recommended amount of water. It has become a whole lifestyle change since I’ve acquired this disease! 🙏🏼

I have restless legs every night. Makes falling asleep a nightmare

I have ET with Calr but not had those symptoms. Interestingly, years ago I did have what I then thought was restless leg syndrome, but it was gone before I was diagnosed in around 2000 with ET.

I try to make sure I take electrolyte drink 1 or 2 times per week. Lots of water is good, but can deplete the electrolytes. I too am CALR1 and have leg cramps some nights. I have had them before having ET, but they are more frequent now.
I am only on baby aspirin, but my platelet count has just hit 700. It has been bouncing around between the 500s and 600s for several months.
I am feeling good generally. Very active. All other blood work good.
I will be consulting with Dr Keng again at UVA. Trying to decide when to begin treatment and whether Hydrea or Besremi.
I saw a specialist at Levine Cancer Center in Charlotte, NC and he thought Besremi showed signs of slowing disease progression. Is anyone else aware of that?

Janice: you’re absolutely correct about getting the balance right! I make frequent trips to the bathroom even with recommended amounts of water! It’s so frustrating! 😩