MPN or not. So stressed! My blood counts have been all over the place for the last few years. I was finally referred to oncologist,

[JenRen0909]

So I went to an oncologist close to home. Horrible bedside manner. Very quick visit. He told me I either have MPD or smokers something. I can't remember the name. The MPD panel came up negative as well as the jak2 and a few others. His nurse called me today and told me they were negative and he thinks it's from smoking and to see a pulmonologist for further testing. I had a pulmonary function test same day as the blood work, it was fine. No COPD. I am 38 yrs old and like I said my WBC counts have been elevated for a few years now. Now so is my hemoglobin and hematocrit along with others. I am now also getting high BP and pulse. Night sweats extremely lethargic, I can't even work. How long does it take to get properly diagnosed and is a bone marrow biopsy needed? I'm thinking about a second opinion. Any answers/help would be greatly appreciated.

[urlbee51]

I was recently diagnosed with Primary Myelofibrosis. I have had symptoms for 2 years (at least). My Doctor sent me for blood work, and a bone marrow biopsy.

I immediately began looking for a Doctor (s) specializing in MPN's and came across

Dr. Brady Stein.

I would highly recommend getting a second opinion as soon as possible, and choosing a Dr. that specializes in ET, PV, and Primary Myelofibrosis.

Best of luck.

[JenRen0909 in reply to urlbee51]

Thank you! What did your blood work show if you don't mind me asking?

[JenRen0909 in reply to urlbee51]

I have also lost appetite, I force myself to eat at least once a day and have lost about 15lbs. In the last 2 months, I have not been trying to lose weight. All the symptoms are there. Have been for a few years but most recently the night sweats, major migrains, very lethargic, very pale. I just look sick!

[urlbee51 in reply to JenRen0909]

If you are able, a second opinion is really important, along with a Doctor that will give you answers, and treatment. Find a Doctor that specializes in MPN's as soon as you can.

[JenRen0909 in reply to urlbee51]

Dr. Stein is who I'm seeing in April.

[urlbee51 in reply to JenRen0909]

Dr Stein is a Dr of Hematology. Specializing in MPN's

[JenRen0909 in reply to urlbee51]

Yes, I know. That's why I'm going to see him.

[urlbee51]

If you haven't already , check out this site.

patientpower.info/

[JenRen0909 in reply to urlbee51]

Thanks again. I will check it out.

[urbancatwalk]

I discovered I had ET quite by accident, and my diagnosis was almost immediate due to family history. I went for a normal blood test. When my platteletes were elevated, my General practice doctor sent me to a hematologist/oncologist. I advised my uncle had PV. The dr. then gave me the JAK-2 test, which confirmed I had the mutated gene.

What are your symptoms? Night swets??? Perhaps you are going through menopause. I live in the U. S. Below is the Facebook link to my dr., Dr. Ortiz: facebook.com/Robinson.Ortiz...

Good luck.

Kathy

[JenRen0909 in reply to urbancatwalk]

No, I have a lot more than that going on. My blood counts have been elevated for last few years, testing shows I'm not menopausal, I just turned 38 in December. Bone/joint pain, itching, migraines. Like I mentioned, oncologist said this is probably what I have, but so far the tests he's done have come back normal... I have a referral for a 2nd opinion. I'm going to try a Dr. At Northwestern that this website recommended. Thanks Kathy!

[urbancatwalk in reply to JenRen0909]

I am sorry that you have to go through this. I have met Dr. Stein from Northwestern Lurie Cancer Center. He was speaking at a seminar I went to. He is excellent and very compassionate. Good luck.

[JenRen0909 in reply to urbancatwalk]

Good to hear! Thanks again. Oh also the huge part is being lethargic ALL the time.

[urbancatwalk in reply to JenRen0909]

I know the lethargic feeling. Do you live in the U. S.??? Most of the people on this site are from the U. K.

K

[JenRen0909 in reply to urbancatwalk]

Yes US. I live in Il.

[JenRen0909 in reply to urbancatwalk]

I have an appointment w him in April! Hope I get some answers. That's the soonest he could see me, I'm hoping this isn't too far out? I just read if you have PV, and no treatment. . Life expectancy is 2 years?!?! I hope this isn't true! 😢 ugh anxiety setting in AGAIN!!

[light]

Hi, there is very good doctor, Professor Ruben Messa in Mayo Clinic Az. Or Dr Srdjan Verstovsek. Top doc's in USA for MPN's. Wising you well.

[Debbweb01]

Find out if u hAve Polycythemia Vera? I have that and it sounds like u cud too!

[JenRen0909 in reply to Debbweb01]

Thank you. I see a hematologic the in April, that was recommended off this site. I hope that's not too late??