I am curious: What symptoms did everyone have in the beginning for PV?

@ubear56 Headaches, red face, itching which I’m an outlier for that luckily and some stinging in your hands, feet and shin bones. Feels kind of like sunburn inside? It’s not constant but we over look these things and unless you do labs regularly, it’s hard to detect/suspect.

My first PV symptoms were silent migraines - migraine aura without the headache. Also, I had very fuzzy thinking at times to the point it seemed to mimic a stroke. Ended up in the ER twice. My advice: Find an MPN specialist who really knows about blood cancer.

I have rarely had headaches, either before or after dx. Heavy periods, like my mother. But, had fibroids so that explains that.
I started to develop numbness in feet but my MD attributed it to my wearing high heels for many, many years.
I was going to see MD for usual blood draw for thyroid and the day before my knee was extremely painful. Preceding that I had a sore on one of my toes that got infected and just didn’t want to heal.
Had the blood work and got a call my hematocrit was high and told to get tested for JAK2 and it was positive. And, also gout dx.
I had blood drawn for the thyroid about every 90 days so if there had been something earlier it would have been caught earlier.

I have PV with the JAK22 postive mutation. I Noticed over time that my Hemoglobin and hematocrit kept inching up..My doctor told me it's dehydration...Over and over even though the blood markers slowly gong up. then one day my right eye went black ..I timed it, it lasted one minute and then t took one minute to recede.. I knew it was a sign of a TIA (Mini strike) so I went to the emergency room..they did every test known to man showing nothing so I went home..(BTW I'm a 77 year old retired Drector of nursing..) when I got homeI noticed how now my H &H were above normal.. thought to myself that's enough I made appointment with a hematologist. My first appointment he came in the room and sad you have polycythemia vera..I had never heard of it..He dd lab work for the jk2 mutation it was positive. I didn't care for the hemolotolgist .. live in Hoston and went to MDAnderson.They always do the lab work of there own and again was positive for the JAK2 mutation..They put me on Hydrourea several different doses finally 500mg 7 days a week with a baby asa.They do consider PV jk2 positive a mylogproliferative ..I'm being seen in the leukemia clinic..Ii don't have the typical PV symptoms like itching , no headaches, redness but d do have problems with a full stomach so keep my meals small, fatigue for sure..I push myself to exercise don't always get there...Over 3 years Ive had 6 phlebotomes.. Was frightened at first, apparently very rare disease but Ive made peace with the disease as I know there's diseases out there that can be much worse..I've always been told ts not inherited by the professionals however I read articles were people say it's ran n their families. If I were you would get to a hematologist hopefully at an academic institution and put your concerns to rest..If you in fact do have PV it's not nothing and your pulmonary embolism's aren't either..Educate yourself and get help...One last thing most doctors have never seen a case of pylocythemia vera and wouldn't know it if it was staring them n the face. It's not their fault, there's just not many of us....Considering Pulmonary embolism's the quicker you put this to rest the better....Good luck......

Diagnosed 4 years ago and never had any symptoms. Just became aware of it after a routine blood test. Treating it now with hydroxy (500mg 4/week) and monitoring it with monthly blood tests. Still no physical symptoms, just out of whack #’s on those monthly tests.

As others have commented, I had been having vision disturbances that are usually associated with the onset of a migraine headache, but I did not have headaches.
And also,as others have commented, many primary care, physicians do not see or pay attention to some very clear signs of the onset of PV in the routine blood work that they do for your annual physicals, etc. Definitely get yourself to someone at a research hospital. Who knows what they’re doing. We are such a small population that the symptoms of the onset of PVR are not on the radar of most medical practice.

I had tinnitus, burning and purplish color in one hand
Tested for circulation issues
nerve damage…finally had a stroke.. without typical symptoms .. just pins and needles in one foot.. after a while called dr who sent me to
hospital where mri showed I’d had a stroke and evidence of previous tia’s
I take 500 hydroxy daily and
blood checks every two to three months

@christina3444 Women are supposed to have it less than man. My answer to that is women have periods every month which is like a phlebotomy, especially if you got heavy ones as I had, hence it is often found when these stop...as for me but I had almost all the symptoms, strong or less strong, they describe for PV since puberty.
Ocular migraines started later but pressure in my head is constant, brain fog after menopause is always there, some days more than others. The toe burning and bluish coloration only started since a couple of month as a new symptom.
And now I ended up with lung embolism when they found the high platelets and hemoglobin as reason with suspicion of PV.
I believe my mom had it too, even though they say it's not inherited...I think it is. My mom ended up with arteriosclerosis and that makes sense too.
Proof for me was a positive incident with collecting my own blood before my hysterectomy that took away a huge migraine I had just before the blood was drawn. I felt like reborn and free of pressure in my head. I hope that phlebotomies will help me again especially if they still help with my now daily headaches I suffer from. Seeing the hematologist this week.

@jackiecarey I believe it's inherited. My mom had many symptoms as me and since puberty but because of menstruation, heavy in my case, it's 'treated' naturally like a phlebotomy and stays hidden till after menopause. Migraines, itchy after lukewarm showers, dizzy or vertigo, later tinnitus, pour off breath climbing stairs but being very active and thin, high metabolism until menopause but Thyroid ok, now having osteoporosis start with broken vertebrae but healing faster than others, always bruised easy especially on my lower legs, always had varicose veins but had no thrombosis with current lung embolism.
There are many more symptoms typically but some are not present like high blood pressure but when young I had only low one or having a more alkaline stomach and therefore no ulcers or heartburn. Generally I believe that's why women aren't diagnosed as often a men, we got natural phlebotomies plus research is still mainly done for men, especially in the past.
Fatigue only started after menopause and not immediately. Before I had endless energy and worked physically a lot.
Night sweats came also later.
Yes many of the symptoms could be explained otherwise but some are not.
Like the bone pain in my fingers already as a young adult or being sensitive to hot baths and showers with itchiness since puberty as the change to dry hair and skin. I could go on but Main thing is that PV is often diagnosed later in life, after menopause, and that phlebotomy is still one of the main treatments. I aim for a monthly one especially it already helped me once before with a migraine and the pressure and fogginess in my brain.

@ubear56 I think it makes sense that having periods with that blood loss could alleviate the symptoms of PV and mask it for a time.
But, I’ve never had migraines nor really any headaches that couldn’t be explained by eye strain, stress etc and helped by aspirin. And, insofar as I recall, neither did my mother.
I feel the positive effects of a phlebotomy almost immediately and certainly by the next day, primarily in how my legs feel.