Hi I happened to be awake, due to a bad night with APS! I was Diagnosed with PV about 13 years ago! Six years I DX'd myself! I had constant hi WBC's, which I was told had nothing to do with PV? I finally went to Hemotologist because everytime I needed an operations(I've had over 25 operations) I needed a special note saying I did not have a hi white count! In order for me to get that particular surgery I needed I had to change primary Doc! My RBC were going up, along with Hematocrit, Hemoglobin and my Iron Stores! I then went to Hemotologist and asked him if I had PV and I was tested and did have it! I've Been with this Hemotologist for 13 years! Christmastime 2015 I lost my left leg! Was told I had Blood Clots spewing from my heart and going to my , toes, got and leg! Because it was Christmastime I was treated badly and by the time I got to the hospital, it was too late! They operated 4X, I had to sign for TPA/Clot Buster, which probably saved my life! A week later on Jan 7, 2015 my left leg was amputated! Sorry for the length of this! PV & APS seem similar to me! One is nicknamed Sticky Blood and My nurses that Took 3 hours to get one pint of blood out nicknamed my PV sludgy blood! They are both caused by the JAK 2 gene! There is a familiar gene too, but don't recall the name Hif2a or something like that! I'm just wondering if there's anyone who has both! I'm on the Hughes Syndrome Charity site and found one other person with both! I've been DX'd with fibromyalgia & MS/ Don't have MS and not sur I even have Fibromyalgia! They're both rare syndromes and AUTO IMMUNE DISORDERS! I thank you in advance for any help I can get! I'm from the USA & England seems to be way ahead with APS! PV is rarer, but been around for years, whereas APS was discovered by an Englisman & a Handsome Debonair Gentleman in 1983! Tomorrow I am going to NYC, To Hospital for Special Surgery, to a Doc Doruk EKRAM, who is only Doctor in USA to have a whole unit of SPECIALSTS on APS! I'm very lucky to live in New York and driving in w/o traffic will only take 30-45 min! Thx in advance fo reading all this! I appreciate this English Charity Sites more than you could imagine!!! GODSPEED TO YOU ALL!!! This photo was taken a few weeks b4 I lost my leg! I'm now 30 pounds thinner and to me look sickly and aged 10 years!
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