I have learnt more from this site than from any of my clinical appointments

[jillydabrat]

hi everyone, have just read pages and pages of topics on here and found them really interesting. My haematologist put me straight on to 1000mg of Hydroxycarbomide and venous section for my PV (jak2+). When I said to her that I was still incredibly tired she looked at me like I was mad! She said that my platelet levels were stable so I shouldn't be tired and she couldn't understand it yet when I read these posts symptoms still persist on these meds and when levels are stable so am I mad to still be feeling so tired? I have had symptoms for at least 12 years but only got diagnosed in 2015 despite dodgy blood results, 3 DVT's and vasculitis which caused all the veins in my legs to leak and I ended up with ulcers. My liver and spleen are enlarged. By 4 p.m. I am tired to the point I have actually fallen asleep while eating my supper and my eyes just start rolling in my head which freaks my hubby out lol. I am extremely concerned that I have not had a bone marrow biopsy to see what damage has been done. Not really happy with my haemo so next appointment in 2 weeks I am going to ask to see and MPN specialist. I won't relax until I have the full picture. I was more than annoyed that she left it to a junior doctor to give me my diagnosis. It wasn't until he talked about Hydroxy being a chemotherapy med that I asked "Is this cancer?" that I realised how serious this could be. I have only seen her twice in a year, the next appointment I found she had passed me to a so called specialist nurse without even informing me she would be doing this. The nurse, God love her, hasn't a clue about MPN's and seems to hate me asking questions so, no, I am not happy with my haemo. I want a true, honest and informative consultation with someone who knows what's happening to me as I am feel I am floating in space with uncertainty. Sorry to have rambled on a bit but everyone on here is so helpful.

[Mwalimu]

Good for you - getting angry, I mean. Politely but firmly insist on seeing an MPN specialist whatever anyone says to you. Good luck and hope you feel better soon.

(Isn't it nice to know one's not alone? Thanks to this site and different forums, I think I know more than my GP and haem put together!)

[Aime]

Totally agree this forum and the MPN website give me more support and information than I have had from any medic. I was quite a quiet natured person who would never have insisted on anything with the medical profession but since being diagnosed with PV, I am much more likely to ask for/disagree with or even dispute info re my condition and treatment. I feel I have had to be.

I think everyone who has access to medics like Prof Harrison and team are so lucky to have medics like them who seem to have so much empathy with the "human" side of our conditions, I.e. Emotions, anxieties, etc.

Keep asking!

Kindest regards

Aime xx😺

[lizzziep]

I hope you can get a better informed doctor. I too have found so much more information from this site than I have from the hospital. I now see a specialist nurse who is quite knowledgeable, however I can see the consultant if I need to. I've been on HU for about 2 and a half years, diagnosed with ET 4 or 5 years ago.

Best wishes

Lizzie