Et

[Hydrox]

Does anyone else with ET have balance problems?

[Swede]

Hi, yes, I have very bad balance but I have always had some sort of bad balance. It is just more now...

[Hayhen]

Hello from California. I have ET neg. and yes balance is part of it.... keep active and stay hydrated. take care.

[Helpatlast]

Yes likewise I have been diagnosed for some years with ET and balance is effected - as mentioned lots of water helps always having a little bottle with you to keep head of hydration as we do tend to dehydrate somewhat and treatments do that too, also I find having little protein bits in my bag too as when I am wobbly sometimes I just need a handful of nuts and am ok, or if out I find a shop and an egg sandwich !! You will learn to manage it and I find I have patches of it being bad and then not for a long time. All the best

[fee13]

Yes I lose balance easily and I cannot stop myself once I start unless I grab something or sit down. Very entertaining watching me try to walk across a darkened room as well, it's like I'm drunk lol.

[stillkicking]

I went through a bad patch of vertigo and balance problems just prior to being diagnosed with ET. Certain things would trigger it. I was particularly troubled when walking down hill on the footpath (pavement) beside our main road. When I went on daily aspirin the trouble almost completely went away, so am quite sure it was connected with the viscosity of my blood in some way. I do hope you are able to find a solution to your own problem with balance as it can be very alarming and frustrating.

Best Wishes,

Peter

[Pamaga]

Yes but I've always had balance problems and often get labyrinthitis or similar inner ear problems.

[Bridie123]

Yep🙄

[Ebot]

That’s all very interesting. I use to have great balance and it’s got progressively worse. I find, for example, if I’m out walking the dog I have to watch that I don’t turn around quickly etc otherwise I definitely lose my footing. I’d assumed it was to do with getting older (I’m not that old!!). Maybe not......!

[Cja1956 in reply to Ebot]

Hi, Ebot,

It’s funny you should mention your dog. I had to take a problem with mine. When I walked her in the morning I had to sit down several times on the way down. I felt like I was going to pass out. At the time, I attributed it to my medication rather than a disease, But now I believe it’s the disease.

[Ebot in reply to Cja1956]

It’s not so much the passing out - there were times when my anaemia was really bad that getting to the top of the road felt like a marathon - it’s more that I twist my head to yell at the dog and then proceed to lose my footing. Utterly inelegant and a suggestion of inebriation. 😂

[Richinspirit]

My husband was diagnosed ET jak2 neg ten years ago and has been having balance problems for the past couple of years BUT when he approached his Haematologist abut it she tested him for, and discovered, it to be peripheral neuropathy. So, not a direct result of being ET. Lots of info' out there about it - check it out it may ease your mind. Best wishes

[Tico]

Hi Hydrox, before being diagnosed 11 years ago, balance problems was a major symptom for me and one of the worst. Atb, tina.🤗

[Cja1956]

Yes, balance problems Have always been a big issue with me specially since I was diagnosed with ET 11 years ago. It’s usually worse in the mornings. Last week I was so dizzy and fatigued that my doctor got concerned and put me on a higher dose age of Jakafi and I feel a lot better. ( I also have PV). He told me I had developed anemia. I see him next week to see if my platelets have finally decreased. Good luck!

Cindy

[azaelea]

Yes, most definitely! At first I put this down to old age (83) but now I'm beginning to think it's the ET. Sometimes worse than others. I was just diagnosed last July. Having said this, quite a few of my elderly friends have complained of balance deteriorating, so still not sure if ET is the cause.

[GardenGal3]

Staying active must help a lot. I still play soccer (40 years now) and work out on a BOSU balance ball, as well as garden and dance in a local street marching band. I guess all that helps a lot, plus Hyroxy to keep the platelet level down.

[Pepper2nd]

Yes but I also have sciatica and neuropathy. My feet feels like I'm wearing socks all the time.

[Stevesmum42 in reply to Pepper2nd]

Great description pepper2. Exactly what my feet feel like

[mhos61]

Before my diagnosis I had the occasional dizzy/disorientated/off balance type spell. I Just presumed old age was the cause, so wouldn’t have dreamed of going to the GP. Thank God a random blood test showing elevated platelets was followed up.

Interestingly, I haven’t had any dizzy spell since commencing treatment with aspirin and hydrea 3 years ago. I believe in my case that proves it was definitely connected to the ET.

[Cja1956 in reply to mhos61]

It’s interesting you mention that hydroxy and aspirin cleared up your dizzy spells. It didn’t help me. But when my doctor put me on Jakafi, it seemed to improve. I guess everyone reacts differently to medication. I’m glad you are feeling better. I am ET Jak2 positive and I also have PV.

[Cookiebaker]

Yes I had balance issues prior to starting HU. My balance has greatly improved since being on the drug for a couple of months. I am glad to hear others had the problem too.

[bordeauxgirl]

Balance problems+ pv+jak2 nah it's just the Gin!