The link between Polycythemia Vera Antiphospholipid Antibidy Syndrome/APS/Hughes Syndrome/Sticky Blood and Budd Chiari Syndromes!!!

Hi All I'm a very rare and weird person so please forgive me! I'll try hard to make this short and sweet! I self diagnosed Polycythemia Vera! Went to nice Hemotologist/Oncologist and he looked into my history! I hat it at age 40 and most men get this in their 60's! I'm a woman who diagnosed myself when I was 40 years old! I was treated properly for disease, but never researched further for any other rare blood disease! I was under the care of a Lovely Hemotologist/Oncologist for 13 years, when during Christmasweek,I fell into the cracks by very busy doctors who wanted to not be working!!! I lost my leg on January 1st 2015! In October my Hemotologist dx'd me with APS! There seems to be a link between All 3 Syndromes especially with me! Does anyone out there have both PV, APS & Budd Christi Syndrome! I'm just afraid that as usual I'll be misdiagnosed and die of liver disease! I itch terribly, the whites of my eyes are slightly yellow, but my doc says that comes with age! What can I do for me to not go undiagnosed with another rare syndrome my poor body will finally give up and go away! I'm a very strong independent person with SCRUPPLES!!! I also have Sjogrens Syndrome, Rheumatoid Arthritis, Maybe Fibromyalgia Heart disease in my 40's! I'm proud to say I'm 63 years old now and was born sick so it's the only way I know! Had JRA when I was a child! I was one of the lucky ones, it only destroyed my knees! Doctors hate me and have always told me I'm mentally ill, till I flatlined twice in St. Francis Hospital where I worked! They couldn't understand why I was alive and decided to use me as a guinea pig, Till my Knight in shining armor stopped the test Monday morning and apologized to me!!! I must say he had steam coming out of his ears!!! Lol... if there's anyone out there that may be able to give me some advice on what to do, I'd greatly appreciate it!!! Thx in advance for ur help and if I'm on wrong site forgive me please?

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  • Hi Debbweb01,

    Sounds like you've been and are still going through the mill. Nightmare for you.

    As I'd never heard of your conditions I just googled them and it came up with

    Polycythemia Vera 'blood cancer in which your bone marrow makes too many red blood cells'.

    APS an autoimmune condition with thick, sticky blood leading to an increased risk of blood clots.

    Budd Chiari Syndrome is a rare disorder affecting liver & blood vessels (more info at britishlivertrust.org.uk/li...

    As Budd Chiari can lead to both ascites and portal hypertension along with itching, it sounds like it shares a few of the effects/symptoms of PBC. So you may well find quite a few people on this site who can empathize with you and may have some coping tips. You'll also find many with Sjogrens Syndrome & Rheumatoid Arthritis. I wouldn't worry that it may be the wrong site; don't think it matters too much. If many symptoms are shared and people can help each other, it's a positive thing!

  • Hi Badpiglet, Thank you so much for your caring reasons and very informative! I appreciate it greatly! GODSPEED

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