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View Full Version : Lupus Anticoagulant disappeared, just in time for E.R. visit. Help.



Sadie
09-28-2010, 04:40 PM
Hi.

I tested positive for the Lupus Anticoagulant five years ago on two separate occasions. Because this was in the middle of 8 first trimester miscarriages, I was diagnosed with APS. Even on heparin and aspirin I never did carry to term, but it's one of those things I'm grateful for in retrospect, since my two daughters(through adoption) are the respective lights of my life.

Anyway, was diagnosed with SLE this summer, mostly because the fatigue had gotten so bad, I get hives from the sun, had photos of the malar rash from the past, Raynaud's, livedo, etc.

However, the only thing that's now showing as positive in my bloodwork is ANA. EVERYTHING else is negative/normal.

But last week I wound up in the ER. Severe numbness/tingling in both legs and right arm, eventually couldn't feel my feet. Also couldn't pee. I mean, I could, but there was dysfunction there- a lot of delay, and then the feeling I hadn't completely voided my bladder. It was like that all day and was at its worse that night. My husband had to help me take a shower, and I couldn't ascertain the water temperature on about 50% of my skin.

The next morning we went to the ER, and although I could tell the numbness was definitely subsiding, the neurologist on call still found significant loss of sensation as she descended down the body, as well as marked hyper-reflexia.

But then the M.R.I.(brain and spine, with and without contrast) showed nothing. She looked on the computer and it was then that I learned that all autoimmune markers/clotting panel were showing up as normal/negative, the one exception ANA.
Antiphospholipid antibodies(which could've explained so many things), where did you go?!

I'm feeling pissed off about this. It's not that I *want* stuff wrong--- but if stuff is going to BE wrong(which, right now, it is. Besides losing feeling, I'm out of breath going up stairs. I can't pick up my baby girl half the time. My eye is twitching like there's no tomorrow, my husband is having to take off work) I'd like it to show up on a freaking diagnostic. Please.


Sadie

shannashimmers
09-28-2010, 08:02 PM
I to have had multiple miscarriages and also tested positive for lupus anticoagulant but then neg for it. From what my doc told me this was common that the test can be pos and then neg. I did finally just get a lupus diagnosis last week so I would be curious to see what others have to say

Sadie
09-28-2010, 08:58 PM
Thanks for the response, Shanna. You were just diagnosed with SLE? Did they do the LAC test again?

sorry for the negativity-- I didn't mean to "dump" on everyone. I was just hoping to get it all out onscreen so I could go parent, lol. It worked by the way-- two small people were put down to bed without this hanging over me, as it should be.

It's just so frustrating.

Sadie
09-28-2010, 09:04 PM
btw the reason I was frustrated with negative aPLs is because a lot of the symptoms I've been having can be classic aPL manifestations, and better treated with anticoagulants as opposed to anti-inflammatories-- it just would've been "easier" to get to the source. But if there's no longer hypercoagulation, that leaves us hanging, I guess. These dang anti-phospholipids have been a real pain for years, and NOW they decide to take a hike.

I love how I'm taking this personally. It shows great maturity, no? :)

rob
09-29-2010, 06:28 AM
Hi Sadie,

It's common to have fluctuations and erratic results on much of the bloodwork related to SLE. Lupus is very unpredictable, and symptoms can change for no logical reason. It can be terribly frustrating at times. You don't need to feel bad for venting those frustrations. That's one of the great things about this site, nobody will judge you, because we've been there too.

Rob

shannashimmers
10-03-2010, 05:19 PM
I go back in to see the doc in a week she took lots of blood my last visit. So Iam not sure if I was retested yet or not I should find out when I go in.