Great question. My first sign was itching after a soaking bath. I love to soak in my big claw foot tub but alas no more. When I do I break out in hives.
And now I have a question, does anyone have torso pain? I have it so bad right now that riding in a car on a smooth road is painful. And if by chance I hit a bump or pothole, it is excrutiating. Even walking across a parking lot can bring on the pain.
And unfortunately I have to report that Mayo Clinic did not accept my request for an appointment
I was continually going to the doctor with fatigue, headaches, and trouble breathing. I was prescribed antibiotics, inhalers, and iron to help regulate my white blood count. After about 8 visits in 3 months I saw the doctor on-call as my doctor was unavailable that day. He looked at my records and noticed that my white counts were elevated all 8 visits and referred me to the hematologist to do a bone marrow test. 2 weeks late I received a call to come back in to the hematologist and was given the diagnosis. I was only 35 years old when I was diagnosed.
Diagnosed a year ago my symptoms leading up to that were headaches, itching and red triangles under eyes and both hands showing read even in upright position. Latter two vanished after phlebotomies scheduled every two weeks first month and half, only ever had 3.
Diagnosed a year ago my symptoms leading up to that were headaches, itching and red triangles under eyes and both hands showing read even in upright position. Latter two vanished after phlebotomies scheduled every two weeks first month and half, only ever had 3.
I had a lot of tingling in my hands and feet. Headaches and a red face that I thought was menopausal haha I am grateful I didn’t get the body itching like most. I’m six months in from diagnoses and hoping to get the dosage right with the hydroxyurea. Labs tomorrow 😊
I had a lot of tingling in my hands and feet. Headaches and a red face that I thought was menopausal haha I am grateful I didn’t get the body itching like most. I’m six months in from diagnoses and hoping to get the dosage right with the hydroxyurea. Labs tomorrow 😊
Good luck. May hydroxy do it for you. I was only on it for a few months before being switched to Jakafi 10 mg and then 20mg. Now really stable except for side effects “scrungy toes” (like scrounged up socks continually under them) and heavy legs. It is what it is; don’t let it stop you living your life although occasionally you may have to pace yourself. All the best.
OMG. You are describing exactly the same things I am experiencing. I also experience vertigo, occular migraines and hair loss. The only difference is I am NOT on PV, so it makes me think our symptoms may be from another source.
Have you had any new issues since your last post.
Great question. My first sign was itching after a soaking bath. I love to soak in my big claw foot tub but alas no more. When I do I break out in hives.
And now I have a question, does anyone have torso pain? I have it so bad right now that riding in a car on a smooth road is painful. And if by chance I hit a bump or pothole, it is excrutiating. Even walking across a parking lot can bring on the pain.
And unfortunately I have to report that Mayo Clinic did not accept my request for an appointment
Hi, I'm 69 and just ended up with serious lung embolism in the ER. Only indication on why I got them is PV or cancer.
Pretty sure I don't have cancer but everything points to PV.
After reading the typical symptoms and that phlebotomy is a treatment I realized I probably had it since a long time undetected.
Since heavy menstruation is one of the symptoms (and I got many of them) I realized that those natural phlebotomies probably saved me until those stopped in 2009. I was and still am plagued with headaches/migraines and at one time, when collecting blood for my hysterectomy OP in 2009, I gave my blood when having an excruciating migraine and after I stood up like newborn, no more pressure in my head, it felt like a heavy load was taken off. That gave me later the idea to donate blood, which is not as easy in 🇨🇦.
Afterwards without periods I developed more and more headaches and less migraines until I had them each morning.
The only 2 symptoms I didn't get were the extreme redness, but I'm pale by nature which gave me just rosy cheeks, and the high blood pressure because I always had low ones and now it just is normal.
But so many other symptoms are there and were always present just in a more diminished form until I ended up with unexplained lung embolism. I will see a hematologist next week but for me the only way to help my body is phlebotomy since I also react to prescription meds with rare side effects. 🙄
I don't believe that this is not inherited, I believe it could be and especially women that have heavy periods which hides the elevated hemoglobin and blood platelets. Let me know your opinions please.
@pamdg it could be, I got them too... and that my whole adult life until today.
I never thought it a sickness just inherited stuff my mom had too.
Today I'm sure it is PV since my platelets are double as normal and hemoglobin is elevated too after my periods have stopped which were like natural phlebotomies.
Connect
Connect
Like
Helpful
Hug
Great question. My first sign was itching after a soaking bath. I love to soak in my big claw foot tub but alas no more. When I do I break out in hives.
And now I have a question, does anyone have torso pain? I have it so bad right now that riding in a car on a smooth road is painful. And if by chance I hit a bump or pothole, it is excrutiating. Even walking across a parking lot can bring on the pain.
And unfortunately I have to report that Mayo Clinic did not accept my request for an appointment
-
Like -
Helpful -
Hug
2 ReactionsI was continually going to the doctor with fatigue, headaches, and trouble breathing. I was prescribed antibiotics, inhalers, and iron to help regulate my white blood count. After about 8 visits in 3 months I saw the doctor on-call as my doctor was unavailable that day. He looked at my records and noticed that my white counts were elevated all 8 visits and referred me to the hematologist to do a bone marrow test. 2 weeks late I received a call to come back in to the hematologist and was given the diagnosis. I was only 35 years old when I was diagnosed.
-
Like -
Helpful -
Hug
4 ReactionsDiagnosed a year ago my symptoms leading up to that were headaches, itching and red triangles under eyes and both hands showing read even in upright position. Latter two vanished after phlebotomies scheduled every two weeks first month and half, only ever had 3.
-
Like -
Helpful -
Hug
3 ReactionsI had a lot of tingling in my hands and feet. Headaches and a red face that I thought was menopausal haha I am grateful I didn’t get the body itching like most. I’m six months in from diagnoses and hoping to get the dosage right with the hydroxyurea. Labs tomorrow 😊
-
Like -
Helpful -
Hug
3 ReactionsGood luck. May hydroxy do it for you. I was only on it for a few months before being switched to Jakafi 10 mg and then 20mg. Now really stable except for side effects “scrungy toes” (like scrounged up socks continually under them) and heavy legs. It is what it is; don’t let it stop you living your life although occasionally you may have to pace yourself. All the best.
-
Like -
Helpful -
Hug
1 ReactionOMG. You are describing exactly the same things I am experiencing. I also experience vertigo, occular migraines and hair loss. The only difference is I am NOT on PV, so it makes me think our symptoms may be from another source.
Have you had any new issues since your last post.
Itching and fatigue, very dull headaches.I just started Hydroxy a year ago. Still working with adjusting. Itching is still problematic.
Do you have an enlarged spleen tgat may be causing your pain?
Hi, I'm 69 and just ended up with serious lung embolism in the ER. Only indication on why I got them is PV or cancer.
Pretty sure I don't have cancer but everything points to PV.
After reading the typical symptoms and that phlebotomy is a treatment I realized I probably had it since a long time undetected.
Since heavy menstruation is one of the symptoms (and I got many of them) I realized that those natural phlebotomies probably saved me until those stopped in 2009. I was and still am plagued with headaches/migraines and at one time, when collecting blood for my hysterectomy OP in 2009, I gave my blood when having an excruciating migraine and after I stood up like newborn, no more pressure in my head, it felt like a heavy load was taken off. That gave me later the idea to donate blood, which is not as easy in 🇨🇦.
Afterwards without periods I developed more and more headaches and less migraines until I had them each morning.
The only 2 symptoms I didn't get were the extreme redness, but I'm pale by nature which gave me just rosy cheeks, and the high blood pressure because I always had low ones and now it just is normal.
But so many other symptoms are there and were always present just in a more diminished form until I ended up with unexplained lung embolism. I will see a hematologist next week but for me the only way to help my body is phlebotomy since I also react to prescription meds with rare side effects. 🙄
I don't believe that this is not inherited, I believe it could be and especially women that have heavy periods which hides the elevated hemoglobin and blood platelets. Let me know your opinions please.
@pamdg it could be, I got them too... and that my whole adult life until today.
I never thought it a sickness just inherited stuff my mom had too.
Today I'm sure it is PV since my platelets are double as normal and hemoglobin is elevated too after my periods have stopped which were like natural phlebotomies.