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
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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
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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.
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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.
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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?