Hi @Chris1, I’ve had a very similar experience with my Essential thrombocythemia (ET), so I’m glad you finally found a good haematologist to work with. I was diagnosed with Essential thrombocythemia (ET) two years ago when I was 37. I had experienced headaches, dizziness and fatigue which were progressively getting worse and really starting to affect my quality of life. After seeing a GP and undergoing all the usual tests I was diagnosed with Essential thrombocythemia (ET). Over the past 2 years I have seen two different haematologists, both of which apparently specialise in MPNs, and neither of them will acknowledge any of the symptoms of Essential thrombocythemia (ET). They have been great in providing information about diagnosis and treatments, however they just won’t address managing symptoms, despite what all the literature says, and even though this is what affects me this most.
I just found it so disheartening and it really took a toll on my mental health. I’ve found ways to manage my symptoms, although I still feel very average most days and just need to limit what I can do, which is difficult in your thirties as I can no longer manage fulltime work without getting rundown. It’s hard knowing I’ll have this for the rest of my life and the specialists won’t even acknowledge the symptoms.