So frustrated
Posted , 5 users are following.
Rang this morning to find out if my JAK2 results are back, after a month and they are, thought I'm going to know today where I am and if I have primary polycythaemia, the nurses couldn't tell me, so they said they would send my report to my haemotololist, they rang and said he would phone me this afternoon with my results, waited all afternoon no phone call! So frustrating, I've now to wait till Tuesday with it been a bank holiday, I can only in my head presume it's negitive as why would he not phone me, as in my head it's not important enough for him to phone me otherwise with the results. Grrrr I'm so frustrated they don't realise how mush anxiety you go through waiting.....sorry rant over!!!!
0 likes, 30 replies
clem19079 julia15874
Posted
Anyway, i read a lot of posts on here about folk who think that physical exercise helps to contain this illness. This is my experience, for over a mth i started to give my cottage a complete make over. I put in a 10 hour day which entailed painting laying new flooring as well as giving all the rooms a total refit. At least every other day i would have to take to my bed because i felt so unwell. Between dizziness, headaches, nasuae , and itiching all over left me feeing oretty miserable.so on monday when i attended hospital i learned that my blood levels where dangerously high, that had never hsppened before. So all this answered a wuestion for me. It confirmed that over the yrs , even in my youth , thst i didnt inagine that i was unwell and couldnt hold down a job . This little incident has me wondering, ehen folk do execise are they adding to their oroblems. I know it doesnt work for me.
julia15874 clem19079
Posted
Hi Clem, I'm thinking the same for me actually the more I do I seem to have these dizzy days and feeling itchy etc...I do have a plan, I've to see my specialist again on the 22nd of September and that's roughly three weeks, in the mean time I've to have a CT scan and ultra sound, my plan is to loose as much weight as possible, keep a diary of how I'm feeling and when my symptoms accur, no alcohol, no iron rich foods and going to try and loose considerable amount of weight. If my CT scan is clear I'll ask for another blood test and see what my levels are then, if still high after all that there's something not right at all and I'm thinking then perhaps I've a different faulty gene that's to blame, that controls my EPO levels, sometimes you have to take things into your own hands, it's very frustrating,
julia15874 clem19079
Posted
kevin81762 julia15874
Posted
Can I ask what other tests your specialist conducted? And what type of specialist you are seeing? Are you in England?
julia15874 kevin81762
Posted
Hi I'm seeing a haemotololist the only test he's done so far is a JAK2 and a full blood count, he said I probably need a CT scan and a ulta sound and some lung test, but I thought I'd be having more blood tests done tbh, yes I'm in England Yorkshire. Xx