Hello

Hello Randal

l'm 56 and was diagnosed wirh PRV 26 years ago.

My symptoms are very similar to yours. My haemotolgist aims to keep my Hematocrit under 50. l only have Phlebotony's every 12 weeks which might explain why my Hematocrit is slightly higher than yours.

l too have 24/7 ringing in my ears but unsure whether it is from PRV or heriditary as my father had tinnitsus but not PRV.

l get tired too but l work 11 hour days and try to exercise as much as possible. l'm in training for the Oxfam 100 kilometre walk next April with long walks in my weekend agenda most weeks.

l did suffer however a DVT and subsequent blood clots in my lungs 6 years ago after snapping my achilles tendon playing basketball.     Having PRV increased the likelihood of developing the DVT and subsequent blood clots. l was lucky not to have suffered a stroke or worse but recovered and have very good health (touch wood) at present.

cheers

Paul                                                     

Hi Randal

Although I have not been diagnosed with PV myself, I have been (and to a degree, still am) investigated for it. I find it hard to believe they would have diagnosed you with PV if your jak2 test was negative as there are other causes that can increase you Hb and Hct. My Hb and Hct, going back ten years, have always been on the higher side of normal and I have an identical twin brother who appears to be the same as me in terms of Hb and Hct. Over the last year, I have had both jak 2 tests (v617f and the exon 12) completed and both have (as far as I am aware) been negative. It also sounds like you only have the one cell line (red blood cells) affected, which from what I understand, is a good thing. That being said, there have been people misdiagnosed, and it wouldn't hurt to ask your Dr to test you for both Jak2 mutations. 

Here's a link which I think you might find interesting, especially the part where Dr Spivak talks about isolated erythrocytosis (red blood cells)

http://www.mpnconnect.com/pvstateofmind/wp-content/uploads/2016/05/EDU-1296-PV-SOM-White-Paper-Final-Upload-031616.pdf

Hello Randal. Some of us here are in UK so there may be a slight delay in us replying as it is only 8 am just now!

I am 65 and experienced my first symptoms, a set of cold blue fingers on my left hand, in January this year. After a few tests I got my diagnosis of JAK2+ PV in April. Since then I have been taking aspirin every day and having venesections about once a month. My last blood test said that my Haemoglobin was 140, my white blood count was 11.7 and my platelets 680. Haematocrit 45.6.

Like you, I have tinnitus all day and night and I feel a bit more tired than I used to. Otherwise I try to ignore it.

Hi Randal and welcome I'm only new here but the advice and support I've received had been wonderful. I'm new to all this and only still in the diagnosis process. I'm female and 47 in November my blood started to rise two years ago, I've been under a Heamotologist for three months now and my blood has risen while in his care currently my heamoglobin is 175 my heamocrit is 0.52 my red blood cells are 5.66 and my platelets are now over 400 at the moment I'm not feeling good dizziness, headaches, stiffness and pain in my hands and they feel cold, slightly itchy skin, no phlebotomies yet but I feel I need one as my head feels heavy and I'm light headed, my JAK 2 negitive but I've just had a EPO blood test and a jak2 exon 12, I'm glad your symptoms are mild

Hello Randal

Like Angela, I am in the UK so my apologies for the delay in responding to you.

I was diagnosed with Primary PRV at the beginning of this year although my Haematologist suspects I may have had it as far back as 2010.

My initial symptoms that I was experiencing were severe migraines with aura, shortness of breath, dizziness, fatigue, weakness (no upper body strength) cold hands and feet, tinnitus and on occasions, pruritis. I also had plethora especially around my face, hand and ear lobes. My JAK2 test came back positive and at the time of diagnoses, my Haematocrit was 60, Haemoglobin 20.3 and Red Blood Cell Count at 6.71

Since receiving regular treatment, my symptoms are now by and large fatigue and tinnitus. I do have a slightly enlarged spleen now but this doesn’t cause me too many issues just an occasional dull ache.  I have not had a headache let alone a migraine since the 28th May this year despite the fact that my platelets are high. With regards to the tinnitus, I was referred to an audiologist at my local hospital. I do have some moderate hearing loss but no one could say whether the tinnitus was down to this or the PRV. I subsequently qualified for hearing aids and whilst I was a little reluctant in wanting to use them, I did from day 1. It made a huge difference. When they are in, I hardly notice my tinnitus. When I take them out at night, I really notice it. I have since bought a tinnitus relaxer from Action on Hearing Loss. It’s a sound oasis playing soft sounds such as surf, wind chimes etc and I have this by the side of my bed and play it for half an hour, which helps me (and my wife for that that matter) to drift off to sleep. It’s on a timer and you can have continuous play, 90 minutes, 60 minutes or 30 minute duration. The music gets quieter as the time lapses. So if your tinnitus (ringing in the ears) is really affecting you, have a chat with your Family Physician and get a referral to see an audiologist or perhaps speak to your Haematologist about this. For me, it’s a god send.

I find it incredible that your Haematologist cannot find your JAK2 test results. This is one of the major criteria’s in diagnosing Primary PRV. That’s just plain careless. I think you should ask to be tested again. If I were in your shoes, I would want to know!

Hope this helps Randal

Kind regards

Keith