JAK2 blood test results?!

Doctors strike????? Can you believe this! This is beyond frustrating. I can relate to how you are feeling because it was months and months of testing' waiting' blood work after blood work. Each test coming back normal and yet my red blood cell levels at times were so high I had to have plybotomy treatment to bring the levels down. Two bone marrow aspirations, you name it I had it and like you all I wanted was to know the cause so I could receive the right treatment. This forum really helped me to be able to vent my frustrations. Other then the frustration how are you feeling?

It's been a very frustrating journey you just get in touch of the finishing line and they move the tape again! I've made an appointment to see my own GP but can't get in for a week and will ask for my bloods to be rechecked as I feel so exhausted and am still having pain in my hands and feet.  I rang the hospital and asked if they have a cancellation could I be considered for it, they took my number but weren't hopeful! So we wait lol! I've done as much as I can to help myself but short of going private I'm in the laps of the gods!

Maxitram, paracetamol, gabapenton or lyrica. It's unlikely heamotology will provide any of these for your pain, they will treat your condition not the symptoms. My doc proscribed the 1st 3 for me and for the best part they work pretty well. I know what your going through with the pains in your hands and feet. I have carpal tunnel in both hands on top of it. All the best

I will try the paracetamol  for my hands and feet thank you. I've had carpal tunnel in one hand so you have my sympathy having that on top! An op sorted mine out but this in my hands and feet is the most strange and annoying feeling. I will ask my doctor for the other meds when I go next week. She's not knowledgeable in PV so I'm sure it will be another wasted visit.

thank you for your response it's so helpful to hear how others are coping.  Thank you.

Needle phobia prevents me doing anything about it. Took me yrs to deal with pv

Oh no! I just don't look and sing nursery rhymes in my head then it's over before you know it! I don't have good veins either I have the thin spidery ones so it's always a challenge and lots of bruises. If they need a pint from me in the future they will struggle! Wishing you well on your PV journey.

I as well have bad veins. I have been told numerous times when I am having blood work to ask the technician to use the smallest needle. It takes a bit longer to fill the viles but at least they get my vein. Also told to drink lots of water prior to blood work to help pump up the veins. I don't mind having blood work now. It works! Smallest needle and drink water prior to testing. I always bring a bottle of water with me.

Hello Suzyq,

I note that you are suffering pain in the hands and feet.  This is not necessarily due to PV but could in fact be caused by gout which is often associated with PV.  When you provide blood for testing for PV it usually is tested for other problems too.  Ask about the result for uric acid levels in the blood and this will show whethet gout is causing you problems.  It can be very painful and particularly affects the feet and hands of sufferers as well as other joints.  There are a few excellent treatments available which will successfully combat gout and make you far more comfortable.  It is worth a try.  I was diagnosed with hereditary gout long before I was diagnosed with PV.  The treatment, taken daily, has prevented any further pain from gout, which in turn has helped with the PV.   It is well worth eliminating from the scene.

 

Thank you Peter

I am going to my GP on Monday so will ask if my Uric acid level can be checked with the blood retakes I am requesting.

Kind regards

Sue