Newly Diagnosed and Clueless

[Jlswetlick]

Hi I am a 59 yr old woman newly diagnosed with PV and my doctor does not think I will have much problems with this disease as I do not have many symptoms and my blood work is not extremely high. But these past few days with this heat I have been excessively tired and hurting badly in my arms and legs with no appetite. I don’t think I can even go into work today. Is this a symptom of PV that one experience? Sometimes I wonder if I am being a hypochondriac.

[jane13]

Yes, lots of us feel the same in the heat. But u r also right : it's easy to think that every health event is due to PV! Good news that you seem to b generally very well, but make sure u get a regular full blood count to monitor things. Also do u have secondary PV (not due to a genetic mutation) or PRVera? Finally, I am not sure whether u r seeing yr GP or a haematologist? If u have PRV u may want to make sure u see a haematologist at some stage unless u have full confidence in yr GP and yr health and blood count remain good. What r yr blood counts?

[Jlswetlick in reply to jane13]

Hi Jane13,

My RBC is 6 x10E6/uL - whatever that means

Hemoglobin 17 g/ dL

Hematocrit 48.1%

Everything else in normal range.

[Jlswetlick in reply to Jlswetlick]

Oh and I am JAK ? Positive. My older brother was diagnosed with PV in 2011 and I had an uncle with it as well.

[jane13 in reply to Jlswetlick]

Well certainly not far off normal: long may it last!

[S031251]

I too have PV - I am always tired and cannot stand the heat anymore I used to be a sun worshipper the hotter the better!

I also worry about being a hypochondriac but I am NOT. Lots of people do fare well with PV - have you been given medication? Your blood of counts will be monitored and hopefully your doc is right - good luck and be kind to yourself.

Anna

[Jlswetlick in reply to S031251]

Anna,

No meds. I was told to donate blood as long as I am able. My brother who has PV does not seem to have any problems but I do not live near him and he would never complain anyways. I rested and drank a lot of water yesterday so feel much better today. Thanks for the reassurance. Just wrapping my head around one more chronic disease.

[mhos61 in reply to Jlswetlick]

Hi Jlswestlick

Sorry to hear of your diagnosis. A lot of us with MPNs do struggle in the warm weather.

You say you’re not on any medication, does that also include aspirin? Also, are you just seeing a GP or have you been referred to a haematologist? The latter is what would be expected.

I’m a bit confused about your dr saying ‘keep donating blood as long as you’re able.’ A diagnosis of an MPN rules donating blood out; unless you mean ‘phlebotomy’ as a treatment for your condition.

Mary x

[Meatloaf9]

Hi, if you have not seen a board certified Hematologist or a mpn specialist then please take the time to do that. I think that they can give you the best information on your condition. If your Dr. is one of those then great.

[Jlswetlick in reply to Meatloaf9]

Thanks, that will be my next step.

[Heidi-W]

I'd definitely ask for referral to haematology for long term monitoring and consideration of aspirin at least. The going to donate blood advice isn't correct either although some of my outdated GP colleagues thought that was a way to combat it too. Sadly our blood can't be reused due to our MPN disease. Most likely the haematology team will arrange venesection for you if your counts creep up. Good luck and do seek a referral.

Best wishes

Heidi (GP)

[Angelinagaffer]

Drink lots of water, eat well and rest. You are most probably still in shock with your news. It is not your imagination,

[Mazcd Partner MPNVoice]

Hi and welcome to our forum, it will take you a while to come to terms with your diagnosis and the impact it will have on your daily life, but you will get there, read as much as you can on our website mpnvoice.org.uk this will help you, and you can ask questions on this forum, we will do our best to answer them for you. Kind regards, Maz