Symptoms still exists

Yes, I still have all my symptoms even when my levels are normal....I also get the burning hands and feet that look red and purple almost always....

i have exhaustion but my numbers are not normal.

They had to drain me last week and took 750ml of blood, and my levels are going up already.

Larry 83512 Hi Larry. I have never heard of calf pains as being a symptom of PV. I don't want to scare you, but I have PV. I also had calf pains for two years. I tried every cure. None of my doctors took the proper tests until I finally could not stand the constant pain. My feet turned blue. Then I learned I had peripheral artery disease. If I had known sooner, I would have saved myself a lot of pain. I then had to undergo four operations to clear out the arteries. I had to have the little toe on each foot removed. I am slowly recovering. I am now on a vegan

diet and scared to eat anything fried or with cholesterol. If you are worried, ask for a test for that disease. I am 77 yrs old, so that is why it is so difficult to recover

enough to walk without pain in one toe. I do walk around the house, but often wish I had been diagnosed two yrs earlier. Best wishes, harrishill

Thank you for your input .The pain in my legs are the most dibilitating.

YES

The pain is still there

My levels have been perfect for six months

I still have headaches, my feet are always cramping and hurting not really my calves.

And fatigue is always there , I can be just fine full of energy then all of the sudden I get so tired .

Good luck , and feel better

Larry 83512. Any doctor could refer you to have the artery test to determine if you do or do not have peripheral artery disease. If you tend to have high cholesterol as I do,this is the cause of the disease. I was healthy and exercised to the extreme. I still had the disease. It was a big surprise to me. The test is not expensive at least it wasn't for me. Hope everything turns out well for you.

harrishill

Larry 83512 Hi Larry I have had PV diagnosis for 12 yrs. Calf pain is not a symptom for PV. It is a symptom for peripheral disease. It may not be the disease, but your doctor shd test for it because it is best to catch it early. If your feet turn purple, call your doctor fast. That means it is urgent to get care.

harrishill

Larry - when they first revised my diagnosis because they initially thought it was Secondary Polycythemia from sleep apnoea, it occurred partially because my Vit B12 was high ! I have discovered an anomaly with this illness (search online - lots of good literature) where it appears to be high but its actually a functional deficiency.

I had very similar symptoms to you and on my venesection they were getting worse ! Hugely worse actually. Anyway I discovered that supplements do help enormously - the problem is that it's very bad to self treat and aggravate the PV as a result. I say this because Vit B12 supplements unmask the PV which is not great. I have major issues with Magnesium as well as B12 and iron deficiency associated with the treatment.