Sticky Blood-Hughes Syndrome Support
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Is IGM of 23 & neuro symptoms enough for diagnosis/treatment?

Hi all,

Currently stuck in diagnosis limbo land for the past 3 months, wondering if it might be Hughes. Do you think my results below are enough for a Hughes diagnosis?

Anticardiolipin IGM antibodies are:

23 (1.5 month ago)

20 (1 week ago).

Negative for all other APS tests (lupus and anti-B2GP1).


My symptoms are neurological (postural lightheadedness, vision changes, full-body numbness, heavy / weak feeling in limbs, small muscle twitches, etc.) and are accumulating every few weeks.

Symptoms relating to blood:

- 1.5 years ago I had a DVT in my foot after a plane ride.

- This entire 3-month ordeal was preceeded by sudden hair loss + a week of severe lightheadedness where laying down would notably bring blood back to my head (I could feel it) and make me feel temporarily better.

- Occasional painful feelings of blood pooling + not moving in limbs (similar to what I felt in the DVT, but w/o swelling)

- On the two occasions where I had significant amount of blood drawn for tests, I strangely felt noticably better afterward.

Again, just wondering if this is enough for a diagnosis.

I've had multiple MRIs, ultrasounds, blood tests for lupus, lyme, etc. Had an EMG, EEG, SSEP, VEP, etc (I guess tests for MS / ALS) and all came out totally normal. I failed a tilt test and passed out after standing still for only 20 minutes.

The blood-related symptoms just have me thinking that whatever I have has to be related to blood, so at this point in my research, Hughes makes the most sense. Just waiting on a rheumatologist appointment to confirm that, but the wait is killing me!

11 Replies

Hi, you clearly do need keeping an eye on, where are you located? As you do need a specialist who understands the disease. MaryF


Hi Mary - I'm located in Seattle, WA (US). My primary care doctor contacted a hematologist listed on the american APS website and he responded by saying I'd be better off seeing a rheumatologist first (my appt isn't til March) and that "no one is truly an expert on this disorder." So I'm worried whether my rheumatologist will even have much to tell me.


Hi other members on here from the USA may be able to help, and in the meantime there are some names on here: Your symptoms need to be taken into account and your score, although not on the high side needs to be taken into account. MaryF


Thanks Mary. Would seeing one of the US doctors listed on the front page of that website be a good idea if I don't get anywhere with my rheumatologist in March?

As mentioned, the Seattle hematologist listed on the APS Foundation of America website didn't seem too helpful.


I would consider contacting them sooner rather than later, I don't know about the other organization you mention, only the one I have sent you. MaryF

1 like

Btw, I realize the best thing I can do is wait to be see specialist (which won't be for another month). But seeing as new symptoms are popping up every couple weeks, I'm anxious to know if any of you have any anectotal information about other APS patients with similar IGM values or symptoms. Thanks!


A lot of us have results which come and go, and some of us stay stubbornly negative in results, I would follow your instincts to see more detailed care, no harm in doing so, and still keep the appointment you have in March, but it is up to you. MaryF


Hi and welcome.

My colleague Mary has given you some good advice, which I agree with.

Please let us know how you get one.

Best wishes.



Hi There and welcome to our friendly site. Unfortunately what you are experiencing with our medical friends across the pond is not unusual. Your difficulty is that because of your medical system with is litigious tendencies, most medics there will not treat APS unless you fit the diagnostic criteria completely or they will be slammed by their insurance! That unfortunately does not help the patient and we hear of this all the time. It is not true what your Doctor said about "no one is truly an expert on this disorder." In London Prof Hughes and some of his colleagues are experts and they have now trained other eminent experts who are scattered over the world and doing wonderful research. Unfortunately Dr's who are ignorant about things themselves often start digging and don't know when to stop!

Many many patients with APS will not or will only sometimes pass the APS blood tests to such a degree that gives them enough to satisfy those Doctors and even then many will only prescribe daily Aspirin when perhaps they should be thinking about warfarin or trying a heparin trial.

Over here somebody who has got two positive blood tests with a clotting incident plus other symptoms would probably discuss the merits with their Doctor of going onto a heparin trial to see if that helps and then if it does, switch to warfarin or just go straight to warfarin for life. In addition to that they would probably be put on plaquenil as this too has a small anticoagulant effect. Here, Doctors are more willing to look at patients symptoms and medical history if blood tests are significantly negative but even then without a clotting incident a diagnosis can still be difficult.

As to your situation, please can I have your two blood results with the reference ranges as I want to see how positive you were. You say you were 23 and 20 but what is the number when it becomes a positive as different labs have different ranges.

Clearly as you say your symptoms do suggest something is going on and that is something you must persist with and don't allow any Doctor to dismiss just because blood tests are negative (in their eyes). If this appointment fails to produce any results then you must keep searching for someone who will listern and eventually treat you in the most appropriate way.

Hang in there!


Hi APsnotFab -- thank you for your VERY helpful message and I apologize for my slow response, as I've been traveling for work.

I definitely agree with you on the need for an expert. A kind member on this forum has messaged me with the details of an APS doctor in Portland who is great. So thankful for a community of such helpful people!

As for my test result ranges -- they were done at two different hospitals/labs so here are each of them:


Negative: <13

Indeterminate: 13-20

Low to Medium Positive: >20-80

High Positive: >80

Cardiolipin Ab, IgM: 20 MPL (High)

Negative 0-12

Indeterminate 13-20

Positive > 20

So both are relatively low positives, but given my symptoms (and sensation from the very beginning that blood was definitely factoring in) I can't help but feel even a low positive has to be of significance.

Curious to know if you've heard of any other APS patients exhibiting minor neurological symptoms with low positive anticardiolipin values?


I have heard of plenty of people that have and plenty of people who have neurological symptoms with negative results including myself! As Ive said before a specialist will take everything including medical history, blood results and symptoms and with a bit of luck close family history into the equation.

Im glad you are getting good information from other members and may have a good contact locally. Thats what we hope to achieve good networking and helping each other.


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