Resent Diagnosis

[debz924]

Hi!  I have recently been diagnosed with APS. I'm a 37 year old female and I've had 3 miscarriages in the last two years. One at 13 weeks and the other two within the first 5 weeks.
I've had one low positive anticardioloipn and two medium. My Beta2 glycoprotein came back positive and I've had a false positive for sphyilis.  I'm not currently on any anticoagulation theraphy. My Rheumatologist told me that "you don't treat the horse until it leaves the barn" as far as theraphy goes at this point. Not until I have a thrombosis. He also told me that asprin theraphy was really my choice. He said that 50% of Rheumatologist say aspirin theraphy and 50% say no. He said that most recommend asprin theraphy to feel like they are doing something but in his opinion 81mg of asprin would not stop a blood clot.

My symptoms are numbness and tingling in both my arms and legs. It has gotten much worse in the last couple of months. I am cold constantly and muscle fatigue has become an issue. especially in my arms. I can barely hold them up without needing to put them down.  I also get slightly dizzy on a regular basis. I've had all this symptoms for a a couple of years but they were milder. If I was out of shape I would understand but I walk everyday and hike at least 3 times a week. I don't smoke, drink only the occassional glass of wine ( 1 to 2 glasses a month), and I am 5'6" and 135 pounds.

This past tuesday I had an episode at work. I was standing talking to one of our nurses and I had this internal swoosh come over me from the head down. Then I got extremely dizzy hard and fast and the nurses said I turned white as a ghost. My breathing was rapid.
I went to the ER and waited for 4 hours and still hadn't been seen so I left and went to another one.
My d-dimer came back positive so they did a c-scan of my lungs and heart and it came back clear. My episode was at 9:30 in the morning and c-scan wasn't done until almost 7 pm. THey released me and told me to follow up with a cardiologist which I am this coming Monday. My rheumatologist didn't want me to come in but told me to keep my May 5th appt.

I have been extremely tired the last couple of days, slightly dizzy and foggy. My word recall is not good. I do public speaking frequently in my job and I had to just apologize for myself yesterday because I couldn't find my words several times through out my presentation.

Is it possible that I did pass a clot and because of lost time it didn't show? I feel like I'm just sitting and waiting for something to happen before they treat me.


Thanks!

Debbie

[antiphos]

When I read of your problems, it brought back memories. I have many symptoms similar or identical to yours. I am a male, so no miscarriages, but otherwise it sounds the same. It does sound like you may have had a clot. Clots do not occur in all cases of APS but are common. In my case, it was deep vein thromboses in the legs, which I think is one of the most common clotting locations with APS. My first occurred in 1972 and, with that one, a piece broke off and went to my lungs and I had an episode like you describe. Eventually, I had several bits end up in my lungs and ended up (much later, in 1994) needing a pulmonary thromboendarterectomy (removal of clots from the lungs, done at the UCSD hospital). Prior to the surgery, i had been getting shorter of breath over the years but was still refereeing soccer games up to 1990. Just prior to the surgery, I was on oxygen for sleeping, but that was due to cardiac failure from pulmonary hypertension.

If your lungs were clear, it sounds like no damage was done. Have you any warm spots anywhere or swelling which might indicate a clot? If you had a clot internally in the abdomen, it likely would not show any external effects. I have been on anti-coagulants (coumadin) since 1973 and now also have a Greenfield filter (implanted in the vena cava in 1994) to prevent any major clot from getting to my lungs.

Unfortunately, I have heard from my doctors that aspirin will not prevent clotting with APS. You can live a long time without too many problems with this disease, witness myself (36 years now). Good luck.