Scared

[Bigshuffy]

Hi i am 43 years old i have had a pain under my left top rib cage along with ringing in my ears and my vision has also changed ive had these symptoms for about 18 months 6 weeks ago i was told by the hospital that my blood tests indicate i may have polycythaemia vera and was told i need another special blood test i get the results in about 4 weeks time i have had 2 venesections but dont feel and change at all im absolutly shattered and in a lot of pain in my left hand side i was told my spleen was fine on my last scan dont really know much about this condition only what if read on the internet im really worried and dont really know whats going on i have read that pv is a form of slow growing cancer should i be worried a letter from the hospital to my gp states negative jak mutation and Epo within normal range and if blood tests are unclear i may have to have a bone marrow test

Many thanks

Glenn

[Ebot]

Don’t panic! Lots of MPNers will identify with that sense of feeling overwhelmed, anxious and out of control that you describe. It will have hit many, if not all, of us around the time of diagnosis.

There’s a lot of scary stuff out there on the internet and few GPs and not necessarily all haematology departments are are always experts in managing MPNs so you do need to be well informed.

Check out MPN Voice online. It was set up by the team at Guy’s Hospital in London which is led by Professor Claire Harrison a world leading authority on MPNs. This HealthUnlocked Forum is also moderated by MPNVoice. So these are good places to look for sensible and reliable information. And this Forum is very supportive. You can also request a buddy through MPNVoice and if you post here, Maz who moderates this Forum, can send you some relevant (and excellent) leaflets.

Take a deep breath .... it will gradually begin to make sense, and you’ll know what questions to ask your haem team.

Meanwhile, go easy and look after yourself. (And really don’t worry if you need a BMB, it’s not that bad and lots of us here can give you some advice.)

[Trocken]

Hi Glenn, I too get a lot of pain in my left rib gage, I have a slightly enlarged spleen as seen during an ultrasound scan where they have found I have a couple of kidney stones and gal stones which they believe is causing the pains, I’m not sure if this is linked to MPN or not? I’m new to it all, due to see urology and have an appointment with my heamotologist in a couple of weeks, hoping someone will unpick it all. I hope you too get some answers soon x

[Mazcd Partner MPNVoice]

Hi Glenn, we all understand how you are feeling, I would also say read as much as you can on our website mpnvoice.org.uk and have a look at some of the videos as well, they are very interesting. If you would like any of our booklets or information about having a buddy then please email me at [e-mail]. A buddy might help you understand more about your diagnosis, a buddy is someone who has the same MPN and takes the same medication so can give help, support and advice from the perspective of someone who really does understand what you are feeling. Best wishes, Maz

[Bigshuffy]

Thankyou so much for your replies i will take a look on the said websites now

Thanks again

Glenn

[Bigshuffy]

Had my results yesterday ive been informed that im also jak 2 exon 12 negative and told i have secondary polycytheamia and dont need a bone marro test and he has refered me to a sleep clinic for tests for sleep apnea not sure why i feel like im getting enought sleep does this sound right tia

Glenn