Hi all.

I am in the process of being diagnosed with an MPN. The doctor hasn't said for sure what type, but from my research it can only be PV. My medical background is sort of fitting the picture. 4 PEs 8 years ago. Totally unprovoked. Gout out of nowhere. Now my toe that had gout aches on a regular basis. I have extreme fatigue. Headaches ( I do have a headache syndrome but it has been under control for years). Pins and needles in my hands and feet. Did I mention extreme fatigue cuz that is a biggie for me. And the thing that started the process is dizziness and weakness.

Over a year ago I ended up in the ED for the dizziness. They told me I was dehydrated, my h/h was up. I pointed out that my urine showed I was not dehydrated at all. So they told me I was overhydrated and sent me home. My PCP told me the exact same thing. Desipite it never getting better.

Late last year I was finally sent to a heme/onc and he diagnosed Iron deficincy without anemia. I was to get an iron infusion. Before I could I had a minor procedure that caused more bleeding then they anticipated. So, my blood work looked great. All normal. Then after the iron it went back up. He didn't care then, but this last time he said he was concerned since my h/h has not come down.

I am JAK-2 negative, but he said there wasn't enough testing done. My next lab work isn't until August and I'm a wreck. Part of me is sure I don't have this, I don't have high platelets or WBCs. Actually, my platelets are low normal. They hover on the cutoff all the time.

I am on xeralto from the blood clots and will be for life. I wonder if that has been a good thing and kept me from being sicker since my blood is thinned out. I can't take aspirin because I also had a bleeding ulcer that almost killed me about 3 years ago.

Sorry this was so long. I am not sure what I'm looking for here. Maybe reassurance one way or the other. It has been good reading what everyone else has to say.