Hi everyone...
New here, but I have read a lot of posts on this forum over the last year. Last year, (in the Fall), I began to experience some odd itching (generalized) on my body, hands and arms when I would go for a run. I would also itch on my legs (shin area mostly) and my hands and arms, for no apparent reason, they'd just itch as soon I would wake up on and off throughout the day. I also, although not very much, would itch after contact with water, albeit, very little at all, and If I did, it would be more after exposure to cooler water, such as at the lake. About a week later (end of September), I was in our local emerge as the itch was driving me mad, some blood work was done, and the emerge Dr said my HB was slightly elevated (17.8) but he wasn't concernded, he just said to redue my blood work in a month. In the mean time, I was referred to a dermatologist for the itch, and was able to get in relatively quickly considering I live in Canada. The dermatologist attributed my itch to dermagraphism, which he tested me for by taking a stick and drawing on my back. But I question this, as I do not get the welts you typically see from dermagraphism, just what appear to be red histimine lines from where I scratch. Sometimes when I itch, i can just run my finger across the itchy part and a red line appears. I had some more blood work done, but through an outside agency, and now my HB was even higher, 18.3 and my Hct was 51.0. My GP refrred me a Internest Dr, who did a ton of blood work and ordered the Jak 2 V617f test, which from what I gather is the predominant mutation in PV, as it presents in about 96% of all cases. The test was done using PSR analysis, which is the far more sensitive. The week it took was agonizing to say the least, but the test came back negative, which I was extremely happy about. I should mention that 17 days prior to this test, i had donated blood on the advice of my mom, but when I inquried if this would have skewed the test, my answer was no, not at all. If I had the mutation, it would have shown up. Although I was happy, the itch was still occuring and when I saw my Internest for a follow up, she said that she no longer suspected I had PV. I asked her about the other Jak 2 (exon 12) test, and she said, her words, "when are you gonna stop looking?" I explained that, although the jak 2 v617f test accounts for the vast majority, there is still a few that test for the other mutation. She pretty much said no, she wasn't going to order it, and that I should do some more blood work in three months, which I did the end of march this year, and my counts were 17.4 for Hb and 49.4 for Hct, which I was happy about... But as of today, I still itch and as far as I am concerned, I am no further ahead in solving this issue. I worry I have PV as I can not find anything else that would correlate to the itch and having a slightly elevated HB and Hct.. That being said, my blood records going back to 2007 have always indicated a slightly higher side of normal in terms of HB and Hct, but never outside the upper limits, that is, until recently.. All my other counts have been normal. The only symptoms I have has been the itch, and on occasion, sinus type headaches... Interestingly, I have an Identical twin brother, who when asking him what his values were, said that his last CBC (done about year and a half ago) showed a HB of 17.3 and an Hct of 50.0...
I feel like like I am going insane, so much so that my GP and other family members are worried about my mental state... Recently, the itch has gotten worse and today, swimming in the lake, I itched a lot after getting out of the water, which, prompted me to finally post...!
I will also note, neither my Internest Dr, nor my GP, think a hematolgist will see me if they refer me, they think my levels are not elevated enough... Go figure..! At my ropes end people... I am not convinced I don't have PV .... and its next to impossible to get answers..