Posted , 6 users are following.
Hi after eight months with my heamotologist and only having the jak2 and JAK exon 12 mutation tests and not really progressing any further with a diagnosis of either a primary course or a secondary reason for my polycythemia, I've now set up a new heamotologist appointment on the 18th of April, hopefully I get some answers now. Xx
0 likes, 28 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
peter98873 julia15874
Posted
Hi Julia.
Yes, you are certainly doing the right thing in returning to your haematologist for answers. I would suggest you make a few notes relating to the problems you are encountering to ensure you remember everything you need to put to the specialist. As far as the BMB is concerned it really should not be a worry for you. When you go along for the procedure tell the doctor performing the task of any fears you may have and these should be resolved. Normally one receives a painkilling injection beforehand and then what follows should be painless for you. It doesn't take any more than a few minutes and is an important test the medics need to supply the best treatment for you. Good luck. Peter.
julia15874 peter98873
Posted
Thank you everyone, hopefully in no time at all I'll receive answers now and if he recommends the BMB I'll feel happy to have one. I'll let you know how things go next week xx
ellen68007 julia15874
Posted
Ellen
lidia1972 julia15874
Posted
glad you get to see the hematologist soon!
julia15874 lidia1972
Posted
Hi yes I get alsorts of horrible symptoms, the fatique and dizziness can be the worsed, but I'm also going through the menopause too, but my GP won't treat me for that because of my red blood cell count, he's scared because of the higher risk of blood clots with HRT and Ive already got thick blood to start with, so I'm not sure what's giving me my symptoms, the menopause or polycythemia, or both it's frustrating, so I'm hoping a new fresh start will be a good decision. I'm sorry your no closer too, are u in the U.K.?
lidia1972 julia15874
Posted
USA , I was having bad pelvic pain too so my ob put me on lupron too so for 3 months I was put on a "chemical menopause ", I finally got my period back, lupron is horrible!! Any way my doctor said it's probably muscle pains I am feeling as bone doesn't have any "nerve endings ", but I AM sure I have bone pains and not muscles! I had to point out that my hemocrit RBC are elevated and have been slightly going up every time, hematology are not gonna see me unless he puts a preliminary diagnosis, I do have enlarged neck lymph modes too but ultrasound showed enlarged but benign looking. So tomorrow back I go to my gp demanding he puts me down as polychythemia or I won't be able to see the hematologist! Meanwhile I have ton of symptoms and feel like on the verge of dying every day!! Sorry for the rant!😔
julia15874 lidia1972
Posted
I'm sorry you sound like your frustrated too, I think for a lot of us finding the answers are difficult, but you also feel vulnerable because every ache, dizziness tiredness etc.....you think hey up, is my blood high again or getting higher,and you can't see how high it is and that's brings on anxiety. I do hope you get sorted, how high is you blood at the moment?
lidia1972 julia15874
Posted