Hi, I was diagnosed with ET last week after jak2 +ve (platelets over one million)
I originally went to my GP one year ago with coccydinia (tail bone pain)
This progressed into left leg and hip pain.
GP gave me pain relief and anti inflammatory drugs (with little effect)
Returned to see GP and she sent me for X-ray of chest pelvis and back.
This then showed I have a migrated filshi clip in L5 of my spine and I also have sacroilitis.
This migrated filshi clip is from being sterilised 10 yrs ago
Then sent me to gyn as pv bleeding. Biopsy taken and still awaiting results of this but need surgery to remove filshi clip in future.
So in meantime platelets still elevated over one million and urgent ref to haematology who put me on aspirin and talked about MPN's, prognosis and symptoms (very scary)
I have an appointment in two weeks for a bone marrow biopsy and aspirate, really worried this will show fibrosis as in having so much leg and hip bone pain.
Hematology also sending me for a corotid Doppler and to see ophthalmology for silent migraines with flashing vision.
Oh and my GP also sent me for abdo/pelvis ultra sound which showed endometriosis and a cluster of cysts.
All this from me going to see my GP for a sore tailbone last year.
I am a staff nurse and little bit of knowledge can be scary.
I guess the main thing I am asking is can this bone pain be fibrosis rather than ET ?