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Old 10-01-2003, 05:36 AM   #1
Join Date: Dec 2002
Posts: 433
Sampy123 HB User
Exclamation anyone with anitphospholipid, please read!

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!!!

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Old 10-01-2003, 02:36 PM   #2
Join Date: Sep 2003
Location: Coon Rapids, MN, USA
Posts: 9
PennyKandy HB User

Can I ask what symptoms you were having?

Old 10-01-2003, 04:12 PM   #3
Join Date: Dec 2002
Posts: 433
Sampy123 HB User

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.

Old 10-01-2003, 06:16 PM   #4
Join Date: Dec 2002
Posts: 433
Sampy123 HB User

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

Old 10-01-2003, 09:34 PM   #5
Join Date: Jan 2001
Location: Madison, WI
Posts: 144
renae HB User

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.

Old 10-01-2003, 11:47 PM   #6
Senior Veteran
Join Date: Jan 2003
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User


I too have APS and have had clots. I have optic neuritis, left sided weakness and tingling, major headaches etc. I am a poster child for APS, and the doctors here could not figure it out. I went to see the man that found APS in patients with Lupus, he works out of London England (and I am from Canada). It is always worth getting it checked out you guys. Clots can occur anywhere in the body, and like Sampy said they can be really destructive! I am on Warfarin for my APS, and it is a God send. Take care all!


Last edited by Administrator; 08-09-2014 at 01:44 PM.

Old 10-02-2003, 03:18 AM   #7
Join Date: Dec 2002
Posts: 433
Sampy123 HB User

I have a terrific team of doctors. I was already on Coumadin and a baby aspirin when they dicovered both sets of clots. Not sure if there's anything else they can put me on. I woke up this morning to severe bruising on my leg, not sure what that's about.

Old 10-02-2003, 03:23 AM   #8
Join Date: Dec 2002
Posts: 433
Sampy123 HB User

You said you have the antiphosholipid thing going on as I do and that you are on warfarin. I hope you know, as I recently found out, that warfarin/coumadin thin the blood but do NOT NOT NOT separate the platelets from sticking. You are still prone to clots! Please make sure your doctor has you on a baby aspirin as well, at the very least.

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