How does everyone deal with the pain from your hands and feet. My fingers feel like they are burning, throbbing, cold, feel swollen etc. Nothing seems to work.
Hello @mordonmordon, Welcome to Connect. I'm sure you are not alone dealing with the burning pain in your hands and feet along with the throbbing, cold and swelling. Have you been diagnosed or seen by a doctor or specialist for the symptoms? Do you mind sharing a little more?
Hello @mordonmordon, Welcome to Connect. I'm sure you are not alone dealing with the burning pain in your hands and feet along with the throbbing, cold and swelling. Have you been diagnosed or seen by a doctor or specialist for the symptoms? Do you mind sharing a little more?
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
Hi @mordonmordon. Recently, while visiting my hematologist/oncologist for followup appts, my blood work showed an increasing upward trend in my hemaglobin and hematocrit over the past year. One of his questions suprised me when he asked my husband (who was with me) if I snored or if I have sleep apnea!
What?? Well, giggles ensued after I told my doctor that I wasn’t aware of any snoring, but my husband offered up that the EPA should be called in to intervene with noise abatement. Color me chagrined!! Haha.
Anyway, the short of the matter is I have an appt coming up for an overnight oxemitry test to see if I indeed have sleep apnea. Being deprived of oxygen, the body calls for more red blood cells. So not every case of elevated RBC or Hemocrit is Polycythemia Vera.
Hi @mordonmordon. Recently, while visiting my hematologist/oncologist for followup appts, my blood work showed an increasing upward trend in my hemaglobin and hematocrit over the past year. One of his questions suprised me when he asked my husband (who was with me) if I snored or if I have sleep apnea!
What?? Well, giggles ensued after I told my doctor that I wasn’t aware of any snoring, but my husband offered up that the EPA should be called in to intervene with noise abatement. Color me chagrined!! Haha.
Anyway, the short of the matter is I have an appt coming up for an overnight oxemitry test to see if I indeed have sleep apnea. Being deprived of oxygen, the body calls for more red blood cells. So not every case of elevated RBC or Hemocrit is Polycythemia Vera.
The specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
The specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
Interesting, isn’t it? I never would have put together sleep apnea or lack of sleep together with blood issues. I see your appointment is for Dec 21. The same day (night) when I have my overnight oximetry test. If I don’t have sleep apnea then I may be heading in the same direction of Polycythemia Vera too.
I’d like to know what you find out. Let’s compare notes, ok?
I was diagnosed with PV three weeks ago with hemoglobin at 19.9 and a hematocrit of 59.9%. The doctor started me on hydroxyurea and phlebotomy every two weeks. After two weeks my hemoglobin is down to 18.7 and my hematocrit 55.6%. I'm scheduled for a guided bone marrow biopsy in January. Does this sound familiar to anyone?
I also have been diagnosed Nov. 25th with Polycythemia my doctor is highly confident that it is Polycythemia Vera we are still waiting for the test to confirm. My hemoglobin after my first phlebotomy is 20.5 and hematocrit 62.4. I started hydroxyurea 2x500mg a day. My Erythropoietin Level is 1.2mIU/mL. Phlebotomys are scheduled every week until Jan.26. I will meet with the doctor at the end of December to discuss next steps. It seems like we are beginning a journey that started just weeks ago.
I have had PV with JAK2 for over 4 years. Started with phlebotomies and Hydrea, now on Jakafi. I just recently found sleep apnea may be related to PV. Sleep study will be done in March. If anyone has info on apnea and PV please post, thanks
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Hello @mordonmordon, Welcome to Connect. I'm sure you are not alone dealing with the burning pain in your hands and feet along with the throbbing, cold and swelling. Have you been diagnosed or seen by a doctor or specialist for the symptoms? Do you mind sharing a little more?
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Like -
Helpful -
Hug
1 ReactionI have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
Mayo Clinic has some information on Polycythemia Vera that might be helpful.
-- Polycythemia vera - Symptoms and Causes:
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
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2 ReactionsHi @mordonmordon. Recently, while visiting my hematologist/oncologist for followup appts, my blood work showed an increasing upward trend in my hemaglobin and hematocrit over the past year. One of his questions suprised me when he asked my husband (who was with me) if I snored or if I have sleep apnea!
What?? Well, giggles ensued after I told my doctor that I wasn’t aware of any snoring, but my husband offered up that the EPA should be called in to intervene with noise abatement. Color me chagrined!! Haha.
Anyway, the short of the matter is I have an appt coming up for an overnight oxemitry test to see if I indeed have sleep apnea. Being deprived of oxygen, the body calls for more red blood cells. So not every case of elevated RBC or Hemocrit is Polycythemia Vera.
Do you know if you have sleep apnea?
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Helpful -
Hug
1 ReactionThe specialist I seen asked my husband and I that question too. I do not snore while sleeping. I do however have issues waking up at all hours of the night and can’t get back to sleep.
Interesting, isn’t it? I never would have put together sleep apnea or lack of sleep together with blood issues. I see your appointment is for Dec 21. The same day (night) when I have my overnight oximetry test. If I don’t have sleep apnea then I may be heading in the same direction of Polycythemia Vera too.
I’d like to know what you find out. Let’s compare notes, ok?
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed with PV three weeks ago with hemoglobin at 19.9 and a hematocrit of 59.9%. The doctor started me on hydroxyurea and phlebotomy every two weeks. After two weeks my hemoglobin is down to 18.7 and my hematocrit 55.6%. I'm scheduled for a guided bone marrow biopsy in January. Does this sound familiar to anyone?
I also have been diagnosed Nov. 25th with Polycythemia my doctor is highly confident that it is Polycythemia Vera we are still waiting for the test to confirm. My hemoglobin after my first phlebotomy is 20.5 and hematocrit 62.4. I started hydroxyurea 2x500mg a day. My Erythropoietin Level is 1.2mIU/mL. Phlebotomys are scheduled every week until Jan.26. I will meet with the doctor at the end of December to discuss next steps. It seems like we are beginning a journey that started just weeks ago.
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Like -
Helpful -
Hug
2 ReactionsI have had PV with JAK2 for over 4 years. Started with phlebotomies and Hydrea, now on Jakafi. I just recently found sleep apnea may be related to PV. Sleep study will be done in March. If anyone has info on apnea and PV please post, thanks
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Helpful -
Hug
2 ReactionsToday I received results for the JAK2 V617F test and I am positive. A home sleep study is scheduled Dec. 21.