Is IGM of 23 & neuro symptoms enough for diagnosis/treatment?

[nadias1987]

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!

[MaryF Administrator]

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

[nadias1987 in reply to 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.

[MaryF Administrator in reply to nadias1987]

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

[nadias1987 in reply to 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.

[MaryF Administrator in reply to nadias1987]

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

[nadias1987]

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!

[MaryF Administrator in reply to nadias1987]

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

[Manofmendip]

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.

Dave

[nadias1987]

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:

ANTICARDLP IGM: 23 MPL U/mL

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?