Et symptoms

[Dazakella2010]

Hi all... I was diagnosed with ET Jac2 + in April this year.... I had a one marrow biopsy done 3 weeks ago and have an appointment tomorrow to find out my results... I could possibility have PV... My symptoms are headaches... I have had a headache since 14th February... I was started on hydroxy and after about 3 months they have started to help my head.... but I have a few days of feeling half normal then Over the last 4 days have felt yuk.... headache, no energy, fatigue and generally not feeling great... just wanted to ask is this normal? also I have been suffering from leg pain.... it could be all down both legs or just one leg...

Thank you for reading

Kelly x

[WileyFrench]

Hi - having a headache for months in a row doesn’t seem like “normal” and I’m sure it’s just awful for you. You definitely should talk to your doc; it’s interesting the HU has helped a bit so maybe your headaches are blood-related in some way. If it was happening to me, I’d be making an appointment now.

[Dazakella2010 in reply to WileyFrench]

I’m under professor Harrison at guys so I’m in brilliant hands.... my headache is ET related. I have had a bone marrow biopsy and get the results tomorrow.

[JenngeetingR828]

So sorry to hear of your diagnosis- I have ET, Jak2 and am in Hydroxyurea. It took about 6 months to get to a place where my headaches and leg pain were down significantly! Not many others complain of the leg pain - at least couldn’t find it - but I swear .. having them hang down when sitting or when standing was unbearable but now .. better. I find elevating them as often as possible helps and also. A heating pad under elevated calves really helps!

[Jahill]

Hi Kelly 👋 went through a similar stage as you .Biopsy then put on hydroxycarbami de..Yes it is normal or for me it was. I didn't have headaches but do have terrible bouts of extreme tiredness..I was diagnosed in February this year and it takes a while to get used to what's happening. The only thing I can say is stay strong talk to a close friend or if you have a understanding family even better, failing that contact McMillan ..Hope the result goes in your favour.

[Zanzibi]

I was just recently diagnosed with ET. Treatment plan is baby aspirin. I suffer from terrible headaches and also have leg aches and odd pain prick pains my my legs. I hope your treatment does help with the headaches. I am most sympathetic about how debilitating it can be.