Sticky Blood-Hughes Syndrome Support
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Hi all- WEll a new year ???????

Late December- ,had some tests done, CT chest ,lower abdomen, and groin area's-- ultra sounds of left lower extremities and all upper exstremities. 2009 had massive clotting going on [AS most of you know } 4 0r 5 months back more clotting not DVT but of the superficial type of course in left leg { same area of left leg - where clots in knee area and groin area} in checking other area's they found fatty liver- and a ingunial herna[ the only thing holding the intestin in is the fat ]. sent to Gastroenterology for treatment. needless to say my life in for radical changes. a strong suspicion of Wilsons Disease- going to go thru 13 tests of blood ; diet to be redone { O BOY ] as if they haven't taken enough away already ? my new dc wants me to lose 16 pounds by JULY ????? . I told her if she wanted 16 ugly pounds gone i would simlpy cut my head offf ?? :-). this broke the ice and lightened the mood.after blood tests done weds the 16 th and more ultra sounds and a meeting with a surgeon -. we wil take it from there if results don't change by july then the next step is a liver bi-opsy { HORRAY} .. i did some research on the Wilsons and there is a direct connection to APS . My new DC when asked what she knew about APS she replied she was formiular with it but didn't know of any connection - so i explained to her that where ever there is blood in my body there could be a connection , and i think i found the facts to bring to her.any one out there that might have any info or sugestions i'm really in need of them. [ other than i'm short old and fat O and lets not forget balding }.- speaking of fat the only place on my body where there is any fat is lower abdomen and lower part of back on each side. An operation will be another problem with my risk factor being so high [-some of you will remember my last surgery. .if i lose the fat 1 st -than the intestine could i guess fall out ?? well off to do my 3 day INR bood draw, with the vampires { I have great people in the lab } and even with the trouble they have sometimes, we get along great !! will be back in a couple of hours and can't wait to get back and see what you guys come up with .. fatty jet

10 Replies

Hi not fatty jet

Hope bloods went ok, those vampires again, so greedy! No more now jet, you're not allowed anymore conditions I completely forbid it! You getting as greedy as those vampires!!!

Seriously hon, I really hope you don't have anymore to deal with!

Take care my friend gentle hugs love Sheena xxxxx :-) :-) :-)


Hi Jet, Im sure you are not fat and you know what they say about baldies....... :-D

Now lets get down to business...... I have found this paper which although written in 2007 is really comprehensive. There is one ...just.... one fleeting mention of Wilsons so I dont think you should get hung up on that because the odds are against it as Im sure that would have come up long before you have orange eyes?????

Anyway here is the link and I hope you find lots of interesting and helpful info here.

In the meantime as Sheena are not allowed anything, zilch, so get that through your lovely smooth head.... xx The witches have spoken!!


Hay my friend -- thats the same info i found, not found any other - got home tonight only to start a bout of diarrhea[ horray ] just what i needed ????????????i hope it passes by 5:00 in the AM or it will make for an interesting ride to Lebanon:-(------- this could prove to be something else??---- DIAPERS-?????-- O MY GOD - I'M STILL A LITTLE YOUG FOR THAT I HOPE -- i'll keep looking tonight till my night time pills - about 11:00 my time-- thanks my friend .. toilet bound me !!


Oh poor you! Hope it isnt the winter noro virus!! Drink plenty and if it is stay home for 24 hours!! Good Luck and keep us posted xx


Hi APsnotFab,

Thank you for your interesting article above!



Happy New Year to you, I hope things smooth out a little for you. Mary F x


this APS is a gift that just keeps on giving!!!!!!! :-)


WE all should wish our sheena well -- with her recent set back .... GET WELL MY FRIEND :-) :-) :-)


Hi Jet

Thank you hon, quite a gift bearer is our APS! :-) :-)

Doing ok!!

Love n gentle hugs Sheena xxxxx :-) :-) :-)


Glad to hear it -- good news on my end - all superficial clots { according to the tech } are gone from both legs she did today :-)---- now the wilsons , all blood work done , all past history has been scanned into Dartmouths system--- now in a week or so i should have another appointment and some kind of direction we will be heading in . Mary say Hi and glad your ok :-) call me in a.m. if and when you can .. nothing from our Suzy ??????????????? she has me worried that girl :-(. sleep tight my pretty-- get your rest - thinking of you -----me---- fatty


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