anyone with anitphospholipid, please read! - Lupus Message Board

Sampy123 · 10-01-2003, 06:36 AM

Although I have not received any results from testing for MS, what I found out just last night, is that what I thought was my typical systemic lupus flare-up, was actually a small stroke. Apparently a clot settled in a blood vessel in my eye. So I just want to say that anyone who has the antipholipid antibody syndrome, which is associated with lupus, to be aware of clots forming. I had open heart surgery to remove three of them, and now I'm learning that the clots are still forming, now presenting as strokes. Guess I need stronger meds. What I really need is a vacation!!!

PennyKandy · 10-01-2003, 03:36 PM

Can I ask what symptoms you were having?

Sampy123 · 10-01-2003, 05:12 PM

For the clot in my eye, my only complaint was having ocular migraines. Apparently, the circulation was cut off briefly and formed a gray patch on my retina. No headache, just wavy electrical lines in my field of vision. Lasted 30 minutes, was having several a month. I had an unusually horrific "flare-up" over the summer, which I now believe was the "one". How easily I passed this off as just another lupus incident, didn't go to the dr., just called her up. As for my heart, I had one episode of chest pains while asleep, felt like an elephant on my chest, enough to wake me and drive myself to the hospital. Nothing showed up, ekg was normal. The huge clots that were inside didn't show up on the ekg. Thankfully, I have a very perceptive dr. who I went to about 3 months later who noticed that both of my ankles were swollen. Sent me for an echo with doppler and there they were. I consider myself twice lucky. I am sharing all of this with the hopes of enlightening others and to strongly suggest that they not dismiss the simplest of symptoms. Unfortunately, with lupus, every symptom must be carefully addressed. Hope this helps.

Sampy123 · 10-01-2003, 07:16 PM

Forgot to add something else that you would never think to associate with a blood clot. I had severe vertigo and vomiting.

renae · 10-01-2003, 10:34 PM

ANYTIME you test positive for the antisophilipid antibody, you are at risk of a blood clot. If your doctor didn't tell you this and put you on at least an aspirin a day, SHAME! Although even the aspirin therapy isn't always the answer---I was on it and still developed an almost deadly blood clot in my KIDNEY--very rare I'm told.