PV and peripheral artery disease PAD

In addition, I am now fighting PV with my monthly blood draw today. Mom's mom had AML and my sister's daughter has neutropenia. So don't tell me that this blood disorder doesn't run in families!

I am so sorry for this - I am sure you did your best at the time. I am 67 and this all started for me this past April. I am still working - I love my job and o do not want to be disabled or handicapped by this. I should hear from Mayo this week and I will go there if they agree to see me.

Re: connection between PAD and PV....I have been diagnosed recently with both PAD and PV. I am an 80 year old, active, never smoked, usually ate well etc. History of CLL, but it has not been active. Have not met with a vascular surgeon yet (Oct). Have a JAK2 mutation which initially led to dx of ET , but blood test revealed low erythropoietin which likely means it early PV. Not sure anyhow has made a direct correlation between PAD and PV- am on xarelto, baby aspirin, hydroxyurea and had a phlebotomy last week. Lots to think about....

I need help with my foot and left leg. My doc told me I don't have neuropathy after touching my foot and found a pulse. I wonder if I have PAD. I had anterior hip done 3 years ago on the Hana table and since then my leg and foot have been tingling, numb, cold and the symptoms are going up my leg with cramping in the calf, foot is swollen, had to buy bigger shoes, trouble walking. Around my left ankle I have lots of broken blood vessels and swollen ankle. The orthopedic doc is a jerk and no help. My current primary we are leaving as she doesn't address complaints. I am going to switch to a different clinic and if that doc doesn't listen to me, will move on. Any ideas the kind of specialist I should see or what to address with my present doc?

I'm sorry to learn that you don't feel heard by your current docs, but glad you are advocating for yourself. I have dealt with neuropathy since my 2011 stroke and I consistently have a pulse in my feet. I am now battling polycythemia. I am receiving great care by a Hematologist Oncologist.
Have you considered your surgeon?
I just remembered having multiple leg ultrasounds to r/o clotting. I am fortunate that I get relief from Lyrica in battling neuropathy.
All the best in your search!

I suffer from neuropathy
I believe it came from HAVINg blood illness ! PV too many RED CELLS ! It’s awful! Pain is intense and non stop especially at sleep time! Good luck to you

I have Jak2 positive PV treated with hydrox since October 2023...I noticed my blood values were slowly rising over time with blood draws..I mentioned to my internist and he said it was dehydration on several occasions..One day my vision in one eye went black, I stayed calm, timed it after 2 minutes the blackness started receding which took another 2 minutes. I knew this is a TIA (stroke warning) so I went to the Emergency room..They did every test known to man and told me everything is fine..When I got home I looked up my blood work and now the H&H levels were well over normal.. I said enough and went to see a hematologist...At my first appointment the hematologist immediately said I have PV, it's rare and that's probably why it wasn't picked up until now. He had a Jak2 drawn it came back positive. in the mean time I went to my cardiologist who picked up left narrow carotid artery off the ED testing from the TIA event.. while waiting on a neurosurgery appointment I decided to go to MDAnderson hematology . Their routine is to retest everything and all came back positive including a bone marrow biopsy. Again in the meantime the neurosurgeon wants to perform a carotid endarterectomy. MDAnderson wanted the surgery done before they started treatment for PV. After the surgery, treatment for the PV started 3 months later..They tried several different doses of hydrox, baby asa and 2 phlebotomies later I'm currently on hydrox 500mg 5 days a week.. I have blood work next week and I hope it's enough to control the PV however I'm feeling fatigued and I expect the MDA will increase the hydrox. My Cardiologist is of the mind that PV can cause vascular and arteriosclerotic changes for several reasons (I won't bore you with the specifics) and merely because of the thick blood and higher incidence of blood clots..He recommends to carefully watch my blood pressure keep it in the area of 120/80. Consider going on a statin for cholesterol control, healthy weight, diet with plenty of water.. I'm 77 never smoked and haven't used alcohol since this ordeal started. I'm giving my detailed story hoping it helps others with PV...One last thing, my Hematologist told me that PV particularly goes undiagnosed on a fairly large scale. person dies of a stroke or heart attack, the hospital codes as such when in fact occasionally the root cause is PV. ...I'm told large academic institutions are working to educate the medical community ....I wish everyone a safe journey moving forward.