I am curious: What symptoms did everyone have in the beginning for PV?
I just wondering what symptoms did everyone have in the beginning for PV?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
I just wondering what symptoms did everyone have in the beginning for PV?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
I was diagnosed with PV in October 2021. Never had any physical symptoms that I can think of. Was discovered by a routine blood test for my PCP. Numbers were way out of whack. Treatment is hydroxyurea and periodic phlebotomies. Still not aware of any physical symptoms.
-
Like -
Helpful -
Hug
3 ReactionsBeen searching for over 2 years, one hematologist oncologist has diagnosed PV. 1 test for jak-2 negative did not repeat, no biopsy despite AVN right hip now needing hip replacement due to pain and imminent collapse of femoral head, no know cause for AVN, diagnosed in 2014! I began having highly hemocrit, hemoglobin and red blood count in May 2022, kept wanting wait and see for 6 months, only suggestion baby asprin, no blood draws? Started with sweating 4 years, night sweats, swollen lymph nodes, fatigue, double vision, rashes red dots, blisters on skin and toes, now itching is maddening! Numerous blood tests, CT SCANS of brain, neck, pelvis and chest still no diagnosis but possible cancer? Appointment on June 12 with new hematology/oncology by primary with request for bloodwork and a PET scan. Possible lung cancer, blood or bone marrow cancer and so many doctors and specialists getting gaslighting only! I’m just about done with western medicine! Still losing 2-3 lbs weekly despite eating healthy and need help! Thanks and good luck guys! This is ridiculous trying to get answers!
-
Like -
Helpful -
Hug
6 ReactionsGout is a common thing with PV Unfortunately.
-
Like -
Helpful -
Hug
1 ReactionTime to see a hematologist along with your cardiologist.
-
Like -
Helpful -
Hug
4 ReactionsThey will need the Jak2 test to confirm but usually with all of those labs high AND the Jak2 test positive, diagnosis will be PV. Your blood is thick and is causing many issues. Def follow up with cardiologist, but I’m hoping once treated your symptoms will subside. Good luck!
-
Like -
Helpful -
Hug
4 ReactionsI was wondering if I should find one just in case.
-
Like -
Helpful -
Hug
2 ReactionsI was getting a little dizzy at times and passed out a few times after a bath so stopped taking them.ThenI had 3 blood clots in one day in one leg.and PV showed its ugly face.Good luck
-
Like -
Helpful -
Hug
3 ReactionsThank you.
I honestly didn't think those 3 values spiking high once would warrent me going any further with this. But I looked at old bloodwork over the last 9 years and my hemocrit has never been below 40 and it just started slowly going up in 2021.
-
Like -
Helpful -
Hug
1 ReactionMy labs were always fine and my platelets were high the previous year. In 12 months my hemoglobin and hematocrit went very high along with platelets. My PC was concerned immediately and said she’s worried I may have a bone marrow issue. Just from the labs? She was correct sadly. I’m a 56 yr old female who never had any health issues and wasn’t on any medications. After time to process, I’m hitting it head on knowing that it least I can be treated and caught it within a year. It’s not a death sentence 😉
-
Like -
Helpful -
Hug
5 ReactionsDo you have sleep apnea, that could be a polycell cause w a negative JAK. Sorry for speculating , waiting for my (RBC 6.00) brothers JAK-2 to come back , until I'm almost certain it's due to hypoventilation/sleep apnea .
-
Like -
Helpful -
Hug
5 Reactions