Went to see my haemo, Dr Marianna David, at James Cook Hospital today. My appointment was brought forward by my specialist nurse because she couldn't answer any of my questions regarding PV, she also admitted she hadn't a clue why I was so breathless. I sat for two hours waiting to see Dr David, only to be called in the consulting room by one of her registrars. Unbelievably, he couldn't tell me why or how to manage the symptoms I am experiencing such as the breathlessness, dizziness, itchy skin, confusion, painful intimacy.........absolutely nothing. He tried to tell me that none of the above were associated with PRV. Thankfully I had printed off the "What are the signs and symptoms of polychemia vera?" from the National Heart, Lung and Blood Institute. I gave him the printout, which listed all of the aforementioned symptoms and he read it but still insisted that what I was experiencing might be due to my other medication rather than the PV.
I was pretty exasperated by this time and I told him I was fed up of getting conflicting information from everybody I had seen, from my GP to my Haematologist. I told him I have visited my new GP for a referral to Professor O'Brien at the Freeman Hospital but my GP couldn't justify a referral because my blood readings were within normal range so, according to my GP, "at the moment you don't actually have PRV?????" Got to admit the registrar shook his head at that comment.
I told him about how MDVoice had provided me with more information than any health professional I had seen and that, through this site, I had been told about Dr Diane Plews, a specialist in red blood cell abnormalities, who was based at James Cook and I wanted to see her for definitive answers regarding my condition. He had already tried to tell me that PRV was not a cancer! I think when I told him that according to the World Health Organization, it was classed as a cancer and that also it is known as a progressive illness he realised I wasn't some sap who would listen to any spew and be expected not to question it.
Anyway, to stop rambling, I will be seeing Dr Plews in 3 weeks. I actually think I was going mad with all the conflicting information. I was so pleased when I read all the posts on here to realise I was actually normal with my symptoms. All I can hope now is that Dr Plews will listen and explain.
I think we need t-shirts printing saying "I'm not lazy, drunk or senile...I have an MPD"