Sticky Blood-Hughes Syndrome Support
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More shallow vein clotting -

LEG IN PAIN , THEY PROBED BEHND KNEE then brought in Vascular specialist-- they sent results to PCP on call and his answer was -- anti coagulation looks good so everything is ok-- Then why in the hell am I clotting ???? GRRRRRRRR. and so I wait till tomorrow and see if new Dc is going to swallow this crap IIIII at my wits end !!!!!

15 Replies

Hi there, I hope you get some answers, keep us posted. MaryF


Hi Jet,

Take real good care Jet and give a hugh to Casey from me. Kerstin


I am so sorry you and your circulatory system have hit another snag.

Why are you clotting again indeed!



Hi G it's behind my left knee , where my last shallow vein clotting was last year, but it this time is going up the back of my leg about 8 inches.

What has me upset as I saw an emergency Dc { not my PCP } and we went over quite a few things, possibilities off pinched nerve to the horrible time I am having with the two types of tremors and also the muscle spasms , aching all over etc.

I call to do follow up and tried to get the same Dc and guess what , they set me up with that Dc to minutes later call back and put me to my PCP who knows nothing of all I went over with, with Carly { the 1 st emerg. Dc }

and as I am writing this PCP calls and say's what's going on ???????

They had trouble with the ultra sound and brought in a vascular person to check and confirm finding. so now I am starting all over with him - he is calling the ultrasound dept. as why is my right leg numb ???

Hope Tech's don't get into trouble ????

more problems with life in general starting last night .

Neuro office called and I need to go for blood work today .Metabolic panel needs to be done so MRI can be scheduled for brain .Can't schedule with out that so I need to get that done . And I told Dc that I wa going to walk in the mall with Casey because , I have had it I can't sit around if I am clotting or not . so he is going to call back. The weather is wet and raw and that's why I can't walk out side as I have to keep warm and dry. and Casey also { He IS NOT EXACTLY A NEWFONDLAND} :-) .

Cal me if you want G I could probably use a breath of fresh air . You have both # " s but I need to hit the rain room and get this blood out of the way.

Well another phone call on me messing up my meds last night ,took a double dose of warfarin actually every thing !!! great state of mind ha.

well that's it so far ----- Casey is been all over me because he knows something is up . he growled at a nurse that approached me when I wasn't looking !!!! he won't leave my side.. Great dog my Buddy :-)


I have pain behind my knee and in front of my thigh. The drs dent me for a stat Doppler

It was negative. I have brusing that corners most of my leg. They continue to keep me on Asprin along with adjusting my Warfin. It looks like I have been beatin. I hate the disease. Anyone find this farmilar?



Thanks Mary and Lure and Lexi-- I am going threw a lot again . and I need to sort things out.!! I forgot to ask WHY am I clotting anyways { I THINK } I don't remember , but I wrote it down may be it will sink in this time. I need a lobotomy ??? Thanks all and I will let you know as at this point anything is subject to change. :-) :-) :-) I just need to get away from everything .


You will have difficulties to clot as you have taking a double dose of warfarin. Please Jet do not forget to tell the doctors that so you do not start to bleed! Thinking of you and Casey. Kerstin


Lex - I didn't bruise - just the pain and that hard spot where the clotting point was.

did your Dc. mention Varicose Veins at all to you ???

Doppler and Ultra sound must be one in the same method of testing ???

Just maybe the difference in what it is called between the U.S. and England or any other country I would imagine!!!!

so far today they haven't changed anything yet---- but like I said before anything is subject to change when they are dealing with me at any time


hi Jet.interested to hear about your leg pain and concerns you have about it.I have just been diagnosed with phlebitis in back of my knee and calf. Not responding to anti-inflammatory treatment yet and very painful. I think it maybe shallow vein clotting and connected to my APS as taking Aspirin but GP not very up on this condition. Will go back to him to ask for an ultrasound. anyone got some helpful advice to offer very worried as was assuming aspirin was supposed to be controlling the problem.!


If you can isolate the area they could feel the warmth or enlarged limb.are you on aspirin only for your APS?. I have problems that are extreme because of the extent of my 25 dia. problems also being APS triple positive that may have 2 underlying autoimmune problems they have yet to identify. so in short i have problems and set backs that thank god others don't have to deal with and i wouldn't wish them on anyone -- not even my enemies---

some of my clots never had pain or swelling -- my lungs and groin , and leg [ DVT ]had no pain-- but this shallow vein has and now we are waiting to hear if i may have more that aren't hurting. I am on 2 thinners and lots of other meds [ 27 a day ] on a regular day.

so any thing else i may help you with BUT keep in mind we are all different and i am not a Dc. even though i know more than most i know - i can't but only help not tell you medical direction or the administrators her will boot my BUTT- They may go as far as to cancel my birthday { i wish ] or even worse Christmas!!!!! Casey and I


Get better soon. MaryF


hello certainly sound very knowledgable about this problem and having lots of complications.yes I am on Aspirin for the APS only.I have tested positive for the Lupus and anticardiolipin antibodies.I have been prescribed Hydroxychloroquine for the inflammatory skin and joint arthritis but not keen on taking this yet until I see the APS clinic. For years I have suffered with a clotting problem in my fingers that was misdiagnosed as Raynauds disease and I now believe is related to the APS. Why don't GP's start regulary testing people for APS and see it as a potentially serious condition in its own right rather than a symptom of something else.


it so awful that they don't

but most Dc's have never heard of it let along test for it .

i can't tell you how many specialist i have been sent to for TESTING that had never heard of APS !!

so i guess we just keep trying to educate and bring awareness to our plights . ------------- Casey and Me


Hi Jetjetjet,

This condition has been know for over 20 years now and these D'c have no excuse for being so ignorant about it.It is a life threatening condition if left undiagnosed.Also as in my experience they are misdiagnosing as other problems like Fibromyalgia, IBS and Raynauds disease.Next week I am going to the specialist APS clinic in London so will let you know how I get on. cheers!


that's great Mary thanks for the smile !!! Casey and me


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