Who has ET experience very dizzy whole day and leg pain knee pain …

[shiela23]

Who has ET experience very dizzy whole day and leg pain knee pain …

[EPguy]

I have PV/ET and get dizzy, full head and malaise most days, it's esp bad in mornings. There are ok periods.

[Mandy-moo74]

Hi Shiela23, I have ET and was diagnosed when I was 18, I am now 48. I also get bad leg pains it is always in the same leg and it comes and goes but it always comes back. I monitored it and thought it may of been linked to my period cycles ( now menopausal so they have stopped) but could not say for sure if this was the case but I definitely get this too. I also get from time to time feelings of being very dizzy as soon as I get up I am all wobbly and this can last for hours.

[shiela23 in reply to Mandy-moo74]

Thank you for your reply… yea mee too im feeling wobbly whole day how do you handle it? What to do to get better this wobbly feeling??? Thank you

[Family-man in reply to shiela23]

Hi Sheila, I’ve been troubled with quite persistent dizziness lately. I’mJAK 2 positive ET too. Wobbly is the exact feeling. Just wondering if you’ve found a way to get around it.

[hunter5582]

Dizziness can occur with ET. It may be a microvascular symptom but could be something else. Some people find relief with a higher dose of aspirin (81mg bid). I would definitely consult with a MPN Specialist about this symptom.

The knee pain may not be directly MPN related, though the deregulation of the JAK-STAT pathway does make us more prone to inflammatory issues, I was having significant pain in my left knee. I had the hyaluronic acid injections (Synvisc) in both knees. It solved the problem effectively. Suggest consulting with an ortho-doc (who works on rehabilitation not just surgery) about what is going on with the knee,

ALl the best resoloving the issues.

[Cja1956]

I was diagnosed with ET in 2008 at age 52 that progressed to MF a few years ago. Dizziness and the wobbly feeling you describe have been part of my life ever since. I used to be a special needs teacher but I had to leave because it became too demanding. I’ve been working from home selling insurance for years. As far as the knee pain, I used to get that too. When I changed my diet, it went away. I reduced my sugar and carbs tremendously. I do suffer from many other aches and pains, but not knee pain.

All the best.