Hi all, after a long time just trying to get rid of PV problems. However, my GP has now recommended a vascular surgeon. She did not give me any names, so I started down the road by myself. It was not reassuring at all.
My one leg is cold a lot, my foot is swollen, and the leg is now bigger than the other. The other is trying to catch up.
Has anyone had the problems, and were they resolved, or is it best just to carry on as is?
Surely your GP should refer you. You shouldn't need to find your own specialist.
That is definitely not an issue to just carry on with. This is an emergent issue that needs prompt attention by a MPN Specialist. PV can cause significant issues with circulation in the extremities. We can also experience edema from various causes, including the medications used to treat PV. It is also possible that it is something unrelated to the PV, but I would not assume so.
Your GP is unlikely to know much about PV and how it manifests. Suggest an urgent call to a MPN Specialist. mpnforum.com/list-hem./ If you cannot access one readily, then at least consult with a regular hematologist ASAP.
Please let us know what you learn and how you get on.
Thanks so much, Hunter. I started the research which you had underlined, and found that one of the Drs. near (not really, but none near), had died. That is the way my research goes at times. It did cause me to give up a year or so ago, but the illness, just kept rolling on. I will continue research tomorrow.
Keep at it until you find someone you can see. It is worth the effort. I drive about 2 hours to consult with a MPN specialist 2x/year. I would go further if need be. I do have a local hematologist who handles my ongoing care. This arrangement works great.
I am having vascular surgery on one leg at end of August, and one leg at a later date. Not sure how it will ease my swollen legs but I’m happy to give it a try.
ET JAK2 + 
Daughter 16 just diagnose
Legs driving me mad
Scared - warm hospital to cold house
