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Sticky Blood-Hughes Syndrome Support
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Need Advice ASAP

I wrote here a while ago about having lupus anticoagulant come back positive on some labs. It's been like 2 months and tomorrow I FINALLY am seeing a rheumatologist! Please please any words of wisdom or advice for speaking to this rheumy about my possible diagnosis. I'm even printing off pictures of what I think was a blood clot in my leg in 2010. I feel like I'm going into this appointment blind!!! Any help is appreciated. Thanks

I'm attaching the pictures of the different stages of what I now believe was a blood clot in 2010.

16 Replies

Hi, go with all your notes, blood results, pictures & questions. If you can, bullet point all your symptoms in age order. This way, hopefully nothing will be forgotten-good luck & let us know how you get on?

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I agree with HollyHeski's advice.


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Best of luck with your appointment. MaryF

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I have read your earlier question. You can in a way feel lucky that you may now have a diagnose and you have not yet had any bad symptoms like PEs or clots etc.

That is very good to begin with. Many members here have gone years without any diagnose and some also on seronegative bloodtests for APS.

What is now important, believe me, is that you get an Expert of APS. I wonder if your present Rheumatologist is an APS-Specialist? If he/she is, he knows exactly what questions to ask and what to look for re symptoms. Then he/she can give you the right drugs if he thinks you need them. APS means that we have too thick blood which has to be properly thinned to avoid clots etc. We need to be anticoagulated!

Where do you live? I guess you need another Lupus Anticoagulant test to be quite sure it is APS and then stop birth control pills.

Read also the answers from one month ago about books and the charity website. Do not ask too many questions as the Doctor also wants to ask you questions. You can not see a bloodclot I have learnt from own experience. But I am not a doctor.

Please let us hear how it goes for you!

Best wishes from Kerstin in Stockholm

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First of all I hope the Reumy you are seeing is an APS Specialist? He she will probably want to do another lot of blood tests to see if you test positive again for a second time.

For your appointment take:

1. A bullet point dated medical history list (typed suitable to give straight to the Doctor)

2. Current Symptom list and any symptoms that are pertinent - i.e. migraines, balance issues, dizziness, cognitive problems, that you may not have at the moment

3. List of other medical conditions with who treats them (typed up and ready to give straight to the Doctor)

4. All relevant medical test results, scans and X-rays plus any recent letters written by other Doctors about you.

5. If your memory is likely to let you down when asked questions on the day, you might also want to jot down immediate family's medical conditions if they are relevant, i.e. mother has APS or Lupus or had DVT, father has had an MI etc etc.

Finally, write a list for yourself of any questions you may want to ask. Good Luck.


Thank you, everyone, for all the replies. The location I'm at in the US is severely lacking in rheumatologist. The place I'm going to is a good clinic and hoping that he's familiar with APS. My hopes are that they will at least run the tests again to see if it comes up positive again.

One thing I've wondered is.. Isn't the lupus anticoag test a positive or negative test? Mine has a normal "range" and I'm out of that range as being High. I can't find any information about why there would be a range for something like this.

Anyways I have printed off pictures and typed up bulletins with history and symptoms. My pcp was supposed to send labs but just in case they forgot I have them in my hand, too. I really really hope I see someone who looks into this.


I do not understand what you mean.

There are three test for APS. One is the Lupus Anticoagulant test which you have said you have tested positive for.You have to do one more LA-test within 12 weeks to be sure you have APS (Huges Syndrome)-

I am not sure if I can explain this in my Swedish/English!

You have special limits if it is too high or it is too low for being positive or negative. If it is over the limit you are postive and have APS.

Hope someone else can answer you better. I am not sure I have understood you correctly.


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where in the US? Northeast Midwest, Southwest West have medical centers attached to major Hospitals ie Mayo John Hopkins Clevaland Hospital Hospital for SPecial Surgery etc worth traveling a few hours to see a Rheumatologist that specializes in Autoimmune Disorders and understands APS.....I live in the Hudson Valley NY and travel to New Jersey every 90 days.....once you have a relationship with a Rheumatologist you can have blood drawn locally and results sent to the Rheumatologist etc.

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I live in the Pacific northwest near Portland!


some suggestions: if you need more information/referral etc.

near you email:

1. hss.edu/conditions_top-ten-...


3. apsfa.org/apsfadrlist.htm

best of luck

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Okay!! Appointment done. She was really awesome and definitely knew about APS. So I'm short, it hasn't been 12 weeks yet so as soon as 12 weeks hits, we will redraw blood and if it's positive for Lupus Anticoagulant again, she told me the treatment for it would be aspirin daily? Does this sound right? She said without having a prior blood clot or stroke they just give aspirin.

She also is referring me to an oncologist for my lymph node situation. So that sounds good *not*.

There are other things wrong but unrelated to Hughes syndrome so for now I'll leave it at this.



Regarding your bruises: I had a strange dark bruise that kept reappearing on my right elbow shortly after my hip replacement two years ago. I feared that my body was not reacting appropriately to the bridging and I was bleeding more easily. But then I took a hard look at my daily activities and found that in order to protect my recovering hip, I was pushing off from the toilet seat with my right elbow from a window sill. Mystery solved. Since then I have tried to be more aware about how I move through life in case I'm unconsciously doing something which makes it more likely for me to bruise.

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Another update**

My haematologist oncologist appointment is scheduled for next Thursday morning. The chest xray came back clear so no sarcoidosis. Have a vascular ultrasound of my right arm next Friday (my two arms have very different blood pressures).

I'm only 27 this is ridiculous!!!


Well, that's good news! I had differing BP's in both arms due to a clot and stenosis in the subclavian artery. If they find no clot in your arm you may have to investigate higher up. I was unable to stent the stenosis because my peculiar vascular architecture meant that the stent would probably rub through my oesophagus causing even more problems. I was told eventually I would grow new veins around the site or have a graft put in rearranging the blood vessels. Decided to wait and with a couple of years down the track now, it doesn't cause me issues but BP is still different.

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Ozchick did you have other symptoms in the arm besides different blood pressures?

The reason they even found out about the blood pressures being different is because I explained to them that my arm is CONSTANTLY going dead. Like all day every day all night long. So she took my pulse and said I had a febrile pulse (barely there) in that arm, compared to the other arm. That's when they did the 2 blood pressures and found that they were different.

I'm not having pain or any lump or anything? Would make sense if I had Hughes and it was a blood clot.

Won't know for sure that it's Hughes for another month though, when I can go and repeat the test.


I've updated my main post- but I do have APS officially now.


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