Polcythemia Questions and concerns... Need answers!!!

[Toshabeatthis]

Hello my name is Tosha was diagnosed with PV November 2015, had alot of symptoms related to this and never was treated. I did research on this and found out without treatment my prognosis is 12 to 24 months... Now finally after three cancer centers and three primary doctor's and many others, I'm getting treatment.. I guess the health care professionals lack knowledge of PV. I also have Factor Five Lieden.. Can this be the cause of my Polycythemia Vera diagnosis??

[Ebot]

I'm glad you are finally getting treatment. It's unfortunate you weren't able to get expert MPN advice from the start. I don't know about the relationship between Factor Five Leiden and PV but it sounds like it is definitely worth pursuing this with an MPN specialist - even if you have to ask the questions via e-mail. I guess I would be interested to know if the Factor V was inherited whether it could be a trigger for the PV and if it is acquired whether this is the result of the PV (I don't know whether you can 'acquire' Factor V). I have acquired Factor 8 (Von Willebrand) deficiency as a result of the PV. It may be, that no one has an absolute answer. I don't know how rare the Leiden is and more to the point how rare the co-occurrence of Leiden and PV. Good luck! Definitely worth some digging and some questioning.

[Toshabeatthis in reply to Ebot]

Ty so much!! I'm definitely gonna keep digging clueless to all this. I'm 42 female and from reading I noticed it attacks mostly men over women.. Also much of the elderly.. Hopefully my new Hemotologist Oncologist is patient with all my questions and concerns. Does anyone know if there are facilities that deal with this MPN??? Any State in the U.S.

[Ebot in reply to Toshabeatthis]

Check out the Mayo Clinic. They are well known for their expertise on MPNs and their website also has info on Leiden's. There was a recent post on this Forum from someone in Upstate NY looking for a specialist and links were posted there. Also check out the MPN Voice website here in the UK. You'll find through the posts on this Forum that you're not alone in terms of your age and your experience. Keep scrolling through, there are plenty of great insights to be found as well as excellent support. All the best.

[Toshabeatthis in reply to Ebot]

Ty again friend

[zvinkovic in reply to Toshabeatthis]

Hi Tosha,

Welcome to the forum. Here is a list of patient recommended MPN specialists so you can find one closest to you.

mpnforum.com/list-hem/

Best wishes

[Mazcd Partner MPNVoice]

Hi Tosha, welcome to our forum. As per the replisd below I would advise you to check the Mayo Clinic website for details of who you can see

mayoclinic.org/diseases-con...

our website has a lot of very useful information about PV mpnvoice.org.uk

best wishes, Maz

[Loubprv Volunteer]

Sounds as though you're in the US?

do never t, I repeat do not read about prognosis on the internet. It's always wrong and misleading.

PV can lead to strokes and clotting because of the "stickiness" of our blood. It will help enormously if you find a haematologist who really specialises in MPN's, best to do that rather than take advice re meds etc offered on this site which is wonderful for bumping up everyone's moral, but none of us are doctors here so you really need some specialist help!

As the other post says, contact the Mayo Clinic where there is a superb chap called Ruben Mesa. His assistants should be able to help with a haematologist who specialises in PV and MPN's .

MPN's are myeloproliferative neoplasms of which PV is one. Long words don't let them worry you.

Many haematologists aren't that familiar ( in my experience here in the UK anyway) with PV ( polycythemia) .

Have a look at our wonderful UK website mpnvoice.org.uk

Loads of info.

Chin up, the prognosis with good treatment is a normal life expectancy.

Love

Louise

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