Not getting anywhere!

Hi Keith this journey so far has been stressful, I've a swollen infected eye and a swollen nose, I think (hopefully) if my mutation is negitive I'm leaving my current Heamotologist, go to a better more knowledgeable one on the desease itself, it's four months since a first saw him and it's dragging on, if it's positive I'll get the treatment needed then change. Thanks very much your all keeping me going. Xx

Your diagnosis is a simple blood test, you should have had an answer a long time ago. once your consultant dicovers you have the discease , it takes a good while to figure out what strain you have. Sad you have waited so long. i would ask why you are waitibg so long. best wishes.

Hi Clem, I went to see my Heamotologist in July, he first took a jak2 test and a full blood count, he rang a week later told me my full blood count had risen, three weeks JAK 2 was negitive, told me he would see me in a months time, I had a CT scan, clear/normal, he then six weeks ago took another full blood count, even higher! An EPO test which was 8, he rang me last week said my exon will be another 18 days he talked about a red cell mass test if it's negitive and Finally a BMB, I've no complaints on the tests he's given me just the time it's taking and the fact he's not recognised my symptoms of been Polycythemia, it's frustrating that I can't get treatment for Menaporse because my GP says my blood is too thick and in his word he's risking my life, but my Heamotologist is really letting it drag on. My GP had told me that going to high altitude and flying is dangerous for me with my blood been this level and I'm wanting to ski in January, I probably won't have a diagnosis by then at this rate. X

Hi julia.  I sent you a link to a site I hope might help.

You should listen to your GP  about travelling etc. don't take chances.

Have you tried contacting your haemotologist about why it's all taking so long? Does he know you have this holiday (flight and high altitude) booked?

best wishes

J x

That's a good idea, I will let him know as I'm also going away and flying in December were off to Switzerland to see the Northern Lights, the whole family to celebrate my mother in laws 80th Birthday and we will be going to a higher altitude. Xx

I live in ireland on a high hill, asside from that i climb either mourne or slemish mountains. Most i ever suffered was my ears popping. Though i usually stay clear of any where i can fall off, just in case. i also planning to go to reykjavik january 2018 for same reason. looking forward to it.

No not yet I've been under him 4 months!

Thank you it's a phlebotomy that I need I think, even my GP said my levels are too high today x

I've been given pro prochlorperazine I've to take three a day regardless and Betahistine Dihydrochloride if that doesn't work, so fingers crossed they will make me feel better x

If they they dont work try stemitil

Thank you I will x

Hi Julia

I just wanted to weigh in on your situation. I'm not an expert, but my feeling is that if both your jak2 tests are normal and your EPO is normal, its probably not PV. Bone marow asspirations are not normally used to diagnose PV anymore. This of course, is only from the research I have carried out on my own. That being said, if I were you, I would want to know what jak2 test was carried out, as some labs do not use as sensitive a test. The quantitative (PCR) test is incredibly sensitive, and can detect the mutation at a very very very small level. 

I understand your frustration though, I'm still wating to see one lol.. I have only ever gotten to see an internist Dr, who has done all my tests, jak 2 v617f, jak2 exon 12, my EPO, and a slew of other tests. She (the Internist) thinks there is nothing wrong with me, and maybe there isn't; although I still itch, mainly throughout the day, and not really after a warm shower, although the odd time I will. I find I itch more if the water is cooler, but once again, this doesn't happen all the time either, and I will itch when I work out and sweat. The dermatologist I have seen, says I have what is called dermagraphism, which he tested me for by writting a number on my back with what looked like a chopstick. I will admit, it (the number) wheeled up after he did the test, and he said, "you're 100% dermagraphic" and took a picture of it on my phone lol. My last blood tests came back normal, and this time, I made sure I did them in the afternoon this time and that I was hydrated, both tests, albeit only 2 weeks apart from one another, were normal (Hb 17.1 and 17.0, hct, 47.5 and 47.4). 

I am still waiting to see a Hematologist, just to double check and to get their opinion. 

Hi Kevin your right it's probably secondary in my case, the thing is Keven, I've not got my exon 12 results back yet and if I was to think it's a secondary reason could then be the menaporse, but my bloods too high to treat that, my blood is just going up with every blood test its now at 0.53 174 and 5.66, these levels are high for a woman, two years ago it was all just above what it should be, since then it's not let up by going back down it just creeps up around two digits every time. I need to get my blood sorted so I can start to treat my menaporse symptoms, but if my blood is playing up because of menaporse then I'm getting nowhere fast. I'll see what my exon 12 says should be this week, hopefully, but I know what you mean. Thank you j

I just thought Kevin that my blood tests have been taken at so many different times, Infact my last blood test I had I made sure I'd drank a pint of water an hour before and that came back even higher, I'm not sure what's going on, it would be nice to have another blood test and it to come back normal and I can get along with life, but the last normal one was three years ago, if my levels had risen and stayed I'd live with that too, but the fact with every one its risen a bit every time is strange, my JAK exon 12 was more sensitive, I've been 6 weeks waiting. I do think that if my exon is negitive leaving thing for a while and just montoring it all as its stressing me out.