MF to PV

[chillin]

I was diagnosed with MF in Feb 2012. A few months ago I was told the proper diagnosis should have been PV. I have scarring in my bone marrow. All of this from the same doctor. I'm so confused. Don't know if I still have MF.

If anybody can tell me what this means, I'd be grateful.

[Paul42]

Hi

Exactly the same happened with me, although it was only a few months for them to change the diagnosis.

Whilst not an expert for a proper diagnosis of MF the scarring in the bone marrow has to be of a significant level. I suspect you, like me, have scarring picked up in a BMB, but that its not enough to be classed as MF.

I believe some scarring is fairly common in both PV and ET.

I suspect that its just taken sometime for symptoms to settle down and a true diagnosis to be made.

Do you know if your JAK2+?, is your spleen enlarged, have you suffered anaemia at all? How have your blood counts been during the period from diagnosis to now?

Paul

[chillin in reply to Paul42]

I am Jak2 positive. I had bone marrow test that was sent to a specialist in Mesa, Az gave the results to my hemo/oncol. Spleen slightly enlarged but never any anaemia. Counts have never been normal, up and down, but pretty good I think. Plasma has always been high and so has white counts.

Thanks for your reply.

[Paul42 in reply to chillin]

Hi

For a diagnosis of PV, unless there is some other factor such as a bleed of some description, you would expect to see elevated HGB levels. Upwards of 16.5 for female, 17.5 plus for a male at least it think.

Not sure about Plasma levels, but elevated white counts, and platelets is not uncommon in PV. Elevated platelets alone would more likely indicate ET.

One thing i have read though is that sometimes people get a bit of a mixture symptoms and to 'label' the condition as PV/ET/MF is harder to do, and sometimes just goes down as a 'non specific' MPN/D.

Paul

[chillin in reply to Paul42]

Thank you so much.

[Loubprv Volunteer]

Hi,

I haven't had that problem, but if I've I've needed any further information from my haematologist and haven't been given it ( some aren't as forthcoming as others) then either change your hospital - I did and it was the best decision I ever made even though I now have a journey of an hour and half each way - or splash out on a private appointment with an expert in MPN's.

Prof Claire Harrision at St Thomas's if you're near London

I see Tim Somervaille at the Christie in Manchester.

I'm sure mpdvoice can point you towards others.

Best wishes,

Louise

[chillin in reply to Loubprv]

I live in the United States.

[Loubprv Volunteer]

Oh golly, sorry - well, I guess the sentiments are the same - if you're not happy, seek a second opinion.

Hope you get the help that you'd like, whereabouts in the US are you?

Super country, we've been a few times, my husband used to work for Holiday Inn and we had some great holidays tagged on to meetings.

I was diagnosed with PV 5 years ago by the way.

Louise

[Islander47]

Chillin, I'm also in the US & assume your BMB was sent to Dr. Rubin Mesa at the Mayo

Clinic in Scottsdale, Az. He is one of the top MPN Dr's in the US. I'm a long term PM patient

(24 years), that was labeled as MDS until correctly diagnosed several years ago at Dana Farber

in Boston. Following that, I went to the Mayo Clinic for a second opinion which was confirmed

by Dr. Mesa. Diagnosing these diseases are difficult, being that there is many overlapping

symptoms between MDS, MPN's & CML. Suggest that you get a second opinion from a MPN

expert. Also all the education about your illness is beneficial to you're mental well being. In

Feb. the Mayo Clinic is Scottsdale will be having another Patient Seminar for MPN folks.