Feel like I am hitting my head against a brick wall

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?

9 Replies

  • I have just replied to your private message. Maz

  • thank you sweetheart, i have read it and printed it off to take with me to my haemo appointment. Hand on heart, I just don't know what I would do without you and my fellow sufferers on this site.

  • happy to help at any time. x

  • Hi so sorry to hear you are having a stressful time but now Maz is onto it you will get the best advice from her and her team. Just to let you know I understand what you are going through, been there, changed GP and let my haem know I wasn't thick and had knowledge of my condition. This resulted in different attitudes from the medics totally.

    Take care, kindest regards Aime xx😺

  • Hi. This is not great is it? Which area of Tyneside do you live? I go to South Tyneside District Hospital and have been with them for ten years. My GP tells me honestly that he doesn't know much about PV so I never speak to him about it. There's no need when I see a specialist nurse at the hospital every four months.

    Freeman hospital is a great place so do keep pushing. If ever I don't feel happy with my hospital in the future I will push to go to Freeman. I thought it would be easy though!

    Stay positive! L x

  • Hi Sand-Dancer

    I am a Teessider luv but would travel anywhere just to get information from a health worker who knows what the heck they are talking about. When my GP asked me "What's MPN?", I thought for God's sake, not another one. Maz sent me a lot of booklets and a poster for our haematology unit today so I photocopied the poster and relevant sections of the booklet and have circled everything that I have experienced or am experiencing and added a letter stating that I have enclosed information so he can get himsel up to spec regarding this rare condition. I think he regrets taking me on already because I do say what I feel. I even told him I was very disappointed in him today. Bet that went down like a lead balloon but if you don't know something, tell me, don't try and justify lack of knowledge just because you think I am seeing someone who knows about the condition because my haemo doesn't. Feeling incredibly down and despondent.

  • I am so sorry about your situation! I too am Jak 2 pos, and a PV patient. I have 2 hematologists, and they tend to give me different answers. I have finally gotten enough confidence to start asking LOTS of questions (after 8 years) and the 1 doc seems to get frustrated with me-but I'm not letting that stop me from asking! I love this site! I am a USA resident, and I haven't found any other PV people near me (although my doc has told me he seems some).

    You need to stick to your convictions and get that referral however you can. Your health is too important to let it slide. God bless you!

  • You can send them all the literature you can find Jilly, but unfortunately you can't make them read it. Maz sent MPN brochures direct to my GP for me. Unfortunately a good deal of the info comes from MacMillan who are not up-to-date with MPNs and only regard them as pre-cancerous conditions. GPs in some cases think no one knows better than they do and there is a stubbornness to listen. Like us, they look up the internet for their info if they haven't heard of something.

    They don't have a lot of study time left after a busy day in the surgery and, like all of us they value their leisure time.

    We all seem to agree though that there is this loop where GPs tend to say to you to ask your haematologist when you want to discuss symptoms and the haematologist will tell you it is their job to normalise blood levels and any symptoms should be dealt with by your GP.

    Being from the UK though, I would just like to say Long Live our NHS. Where would we be without them, warts and all.x

  • Very sorry to hear this - Maz will be able to help you. I understand what you are going through - keep calm and positive. In my thoughts, Sue

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