Has anyone here with PV /w jak2 suffered loss of balance?

Hello. I’m 78 with same diagnosis for last 6 years. I also have bilateral neuropathy caused primarily by back problems and I attribute whatever occasional balance problems to that and not PV or the HU I take, However, I suppose it may, in some small way, be contributing to it.
If you have not had your ears checked and/or if your BP may be high those are the two things that certainly result in balance problems.

I’m 73. PV JAK2. Since starting HU, I have had a few vertigo and dizziness issues. The few that I’ve had were directly related to me not maintaining proper hydration. As long as I make sure that I drink at least 64 ounces of water a day I’m fine.

I don’t have PV , but have been diagnosed with ET with JAC 2, and have had balance issues for years. My balance physical therapist diagnosed me initially with a unilateral Left vestibular deficiency in 2014, but those balance issues progressed until in 2024 I was diagnosed with a Bilateral vestibular deficiency. I was never advised, nor did it ever occur to me that the blockages in my inner ear canals causing falls , could have been due to advancing high platelet counts over the years! I was told that the blockages were possibly due to using antibiotics for sinus infections caused by scarring. Years later a P Therapist said they no longer saw that as a cause; that it might be due to aging. By this point, at 82 years of age, there’s no way to really refute that. However, your question leads me to wonder if the platelets blocked those narrowing canals!

I have PV and Jak2+ and suffer balance issues, I think it’s just a thing with us. If it’s not the neuropathy it’s the occasional foggy feeling in your head or even the slightly blurred vision that just comes and goes for a few minutes. I just make sure I’m aware of my surroundings and watch where I’m walking. Don’t stress over it. I’m just turning 60 and it’s common with people who don’t even have our disease!

@tree7737 Thanks for your comment. I have Kaiser Permanente and have requested an appointment with an ear, nose & throat physician. You have to get a referral to everything in Kaiser. They have ignored my request and only given me balance exercises.

Iam just completing, with a group of us elderly, part 1 of Dr. Lam's Tai Chi for arthritis. I have had PV with JAK2 since 2022. The group meets at the YMCA twice a week for 45 minutes. The balance benefit is amazing. It's slow motion body movement but the brain must learn it. I highly recommend you try.

I’m in Northern California.