Have PV and also APS/ALSO KNOWN AS: ANTIPHOSPHOLIPID Antibody Syndrome or Huges Syndrome Doed anyone out there that has both!

Have PV and also APS/ALSO KNOWN AS: ANTIPHOSPHOLIPID Antibody Syndrome or Huges Syndrome Doed anyone out there that has both!

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!

5 Replies

  • Oh! Debbweb01, were the surgeries before your PV dx? I'm in Australia .Sirry about your leg -I have been dx without 2years ago -on HYdreA and aspirin . I'm 72 but doing well -never had a blood clot-were you on medication ?

  • Glad ur doing well Mardi! I have APS ALSO! Do you have both? You sound amazing and it's wonderful you are able to use this WEBSITE!!! God Bless You!

  • Hi Debbweb01,

    I was interested in your post. I have ET and some autoimmune issues - thankfully not APS. I'm also lucky to have fared well, considering! I did test positive for cyoglobulins when I first went to rheumatology but that has not been mentioned since. I'm on aspirin for the ET, hydroxychoriquine for Lupus and some other silly drugs for scleroderma. not sure if this is any use to you.

  • Hi Debbweb01 , no I've never heard of APS -I'll have to google it. I often wonder if my mum had PV as she died with a black toe at 89. They decided not to amputate her leg at that age and predicted with accuracy the month of her death.

    Before that she had heart failure but only ever one heart attack and a stroke (which caused not a lot of damage) -after the heart attack at 72 she lost a lot of weight and could never put it on again. She had migraines for many years until the heart attack and when she started taking a full aspirin a day never had one again. plenty of PV clues there -who knows?

    Do you have a prosthetic leg? All the best -Mardi

  • Yes Mardi I do and I'm starting to walk again! I find that walking is not only good exercise for the body, but for the soul too!!! For the mind! I walked a half a mile yesterday and was sooooooo proud of myself that I announced it to the world! I was in rehab for only 2 months! Wen I got there there were 2 other people like me with one leg that had been there over 2 months already! I started crying and said I REFUSE TO BE THERE FOR 4 months! Wen my physical therapist told me to 30 reps I did 40! I just kept going and going! I got out March 10th and onEaster Day I Started running! Then I had a car accident, head on ! A 19 yr old gal was driving on wrong side of road and I was hit head on! After car accident I was never the same! Then had tummy blockage and had emergency surgery, and that was it for me! The 2 exacerbated my APS & was DX'd in October 2015! I am not sur of what you have! What does it do to you? Do you have a blood clotting disorder? Thx for responding! Do u live in USA OR UK?

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