MPN Voice
3,178 members4,820 posts

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,

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,

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.

19 Replies
oldestnewest

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.

Reply

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

Reply

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!

Reply

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.

Reply

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

Reply

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

Reply

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

Reply

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

patientpower.info/

Reply

Thanks again. I will check it out.

Reply

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

Reply

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!

Reply

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.

Reply

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

Reply

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

Reply

Yes US. I live in Il.

Reply

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!!

Reply

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.

Reply

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

Reply

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

Reply

You may also like...