Those who have read my posts will know i was diagnosed Jak2+ PV in early 2015. I had had symptoms for at least 12 years so when I was diagnosed I felt two things:- overwhelming relief that finally I had a name for what was wrong with me but also fear of what damage had been done over all those years. My spleen is enlarged and my liver is HUGE. It wasn't until I found this forum that I even knew there were such things as MPN specialists. The amazing Maz provided the details of my nearest MPN specialist at the Freeman Hospital in Newcastle so, today, I went to my new GP to see if he would refer me so I could talk to somebody who actually knows what an MPN is (my GP didn't even know what MPN was!). He looked at all my blood results and because the Hydroxycarbamide has brought my blood levels in order, he refused to refer me. I cried all the way out of the surgery. It's the same story that I have seen here, GP's just won't look past the blood results. I want to talk to a specialist about the tiredness, the dizziness, the fear about the delay in diagnosis but he said I had been referred to a haematologist so he cannot justify referring me to the Freeman. I am sobbing my heart out with frustration. I have never had a bone marrow biopsy so I don't know how scared my bone marrow is. I feel like I am floating in this bubble that nobody knows anything about. I am seeing my haemo on the 26th so I am praying she will refer me, even for just peace of mind. I am pretty sure I am entitled to a second opinion. I am now going to print off everything I can about MPN and send it to my GP to get him up to scratch. Pretty bad a patient having to educate their GP. My head is throbbing. The specialist nurse my haemo has put me under hasn't got a clue. I wish GP's would look past blood results. Has anybody had this experience? Maz, what can I do?
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