I have my 2nd doctors appointment tomorrow following confirmation that I have PV which was confirmed after a bone marrow biopsy.
I am JAK 2 negative but am suffering badly with fatigue,confusion,ringing in the ears,and very severe tingling all over which feels like I have had an electric shock.
I have had a few days where the symptons are manageable but most days are terrible.
I have had a horrible few days and have ended up sleeping most of the weekend and I'm now back in work not feeling any better.
I spoke with my Hematologist a week ago who has advised that they will see me again in a couple of months but they will not be looking at doing another Venus section as I did not feel any benefit from the first one.
Work have been outstanding with me over this but I could do with some advice regarding my doctors visit tomorrow.
I don't want it to be a wasted visit so can anyone help with what I should be asking the doctor please that may help either get me back to Hematologist or manage these symptons better than I have been??
I have already posted something before with a little more detail if needed
Hi James, sorry to hear you are going through a tough time being diagnosed plus the horrible symptoms. I have PV too and jak 2 negative. I find when my bloods are behaving, my life is near normal apart from having to go to bed early if I want to keep going at work.
As you learn more about your disease and feel you are getting some control over it, things will improve. When I go to medic appointments, I write down all my questions and worries beforehand and will also, as you are doing, seek information from all the lovely people on this forum. If you are not happy with any of the answers insist on getting the right answers, it is your disease and your body!
Can I reassure you that you are not on your own even though it may feel like it just now. We all went through a load of emotions when first diagnosed - anxiety, fear, dread, depression but you do climb back out of that rut and start living again.
Keep in touch, remember a lot of fellow forum members have had PV for many years and are still here.
I must admit I am finding it very difficult at the moment and the fact I look ok on the outside doesn't help when talking with people as the first thing they say is"oh you look fine"
I just feel like I have been left in limbo as my doctor doesn't know a great deal about PV which is understandable and I also do not really want to wait two months until I go back to the Hematologist.
I went to doctors a few months back as I was suffering with headaches,shortness of breath and said I just did not feel well in myself and he put me on Fluxotine(prozac) and has just recently increased my dosage from 20mg to 40mg following confirmation of PV which seems madness to me.
Do you know if there is anything I should be prompting the doctor to do for example should I be having regular blood tests?
I've had PV for 8 years and understand your symptoms. I feel tons better after my venesections. I'm surprised your haemo isn't doing any more if your blood counts are high. I thought they did them to reduce the iron so that we can't make red blood cells as easily. The reduction in red cells is what makes us feel better.
I to have days of major fatigue and am so tired my whole body hurts. I can sleep most of the day and still sleep all night. Most of the GPs in my surgery know very little about PV, but I'm fortunate I only have to ring my haematologist and I get an appointment within in days, she even apologises if I have to wait a week. This is between my regular 3 monthly appointments. I'd be inclined to ask to make an appointment with the haematologist and what your blood levels are and what they should be.
If I could help,I would, but I am newly diagnosed myself and as such couldn't and probably shouldn't offer any advice to you. I am still learning about the disease, and read all I can on here to glean as much information about the best way of dealing with it. I expect that Maz will step in and help you. She seems to be the Guru on here and has access to the haematologists that help out on MPNVoice. She is very kind and compassionate and I expect you could message her with any worries that you have.
I wish you well and many of the people in this lovely group are exceptionally helpful and knowledgeable, so you have come to a good place.
Thank you to everyone that has posted some advice.
I'm going back to my doctor again tomorrow as they want to check if I'm diabetic as the tingling they say could also be linked to that...even though it is one of the main symptons of PV.
I really feel there is a real break down in communication between my doctor and haemo but once I've been the doctors I'm going to call the haemo and have a chat with them.
You guys have realy given me a light at the end of tunnel in regards to managing symptons and I cannot wait to have less bad days and a lot more good ones.
Hi James, hope things are better for you now you have seen your GP. The thing with PV is that you will need to learn what is best for you, I have PV for over 10 years now and things still tend to change as you go through the season, and of course the days when you catch the odd virus that goes around. There is life after PV so stick with it and if any doubt speak with the hospital team you have, the site here is very supportive and you will find the folks on here a great help.
Hello James, I live in Bristol and had a blood test in 1983 which my GP referred straight away to the Haematology doctors in Frenchay. They did all the diagnosis and with various tests including the bone marrow examination which showed I had PV and I was put on Busulphan and then on to the well known and well tried Hydroxycarbamide although in those days it was named Hyddroxyurea. I live a normal life and like walking, cycling, skiing and am quite a busy bee, even though I am now 70.
The drugs helped me and freed me from headaches, prickly skin, seemingly peering through a broken glass with eye problems, giddiness, pains in the side due to swollen spleen (although I didn't know it was swollen), night sweats and a general feeling of getting old - and I was 37!
My PV changed to Myelofibrosis in about 2010 and I am now on Ruxolitinib which my body much prefers to Hydroxy'.
Get your GP to have another appointment. I was going every week and then every two weeks in the early days. If the bloods change then you will need to have check ups more regularly for a while and then gradually the time between haematology visits will increase. I now go about every 3 months unless I feel there is a problem in which case I have a blood test.
I am now with the Haematology group at Southmead who seem to be very busy, but still looking after me very well.
I don't know your age or anything about you, but I wish you well for the future and am happy to meet for a chat and cup of tea or beer.
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