It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 10-01-2003, 06:36 AM   #1
Inactive
 
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!!!

 
Sponsors Lightbulb
   
Old 10-01-2003, 03:36 PM   #2
Newbie
 
Join Date: Sep 2003
Location: Coon Rapids, MN, USA
Posts: 9
PennyKandy HB User
Post

Can I ask what symptoms you were having?

 
Sponsors Lightbulb
   
Old 10-01-2003, 05:12 PM   #3
Inactive
 
Join Date: Dec 2002
Posts: 433
Sampy123 HB User
Lightbulb

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, 07:16 PM   #4
Inactive
 
Join Date: Dec 2002
Posts: 433
Sampy123 HB User
Post

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, 10:34 PM   #5
Inactive
 
Join Date: Jan 2001
Location: Madison, WI
Posts: 144
renae HB User
Post

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 10-02-2003, 12:47 AM   #6
Senior Veteran
(female)
 
Join Date: Jan 2003
Posts: 665
AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Post

Hello!

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!

AngelicBrat

Last edited by Administrator; 08-09-2014 at 02:44 PM.

 
Old 10-02-2003, 04:18 AM   #7
Inactive
 
Join Date: Dec 2002
Posts: 433
Sampy123 HB User
Post

Renae,
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, 04:23 AM   #8
Inactive
 
Join Date: Dec 2002
Posts: 433
Sampy123 HB User
Post

AngelicBrat,
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.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Anyone with Chronic idiopathic nausea? Bungee3006 Digestive Disorders 132 08-14-2010 02:03 PM
Does anyone have these symptoms? Lizzy73 Lupus 13 10-20-2008 08:16 AM
Anyone with Anxiety issues - please get this book loretta38 Thyroid Disorders 3 05-02-2007 04:42 AM
LIPOSVELT ??? Anyone know anything about this product... EAN1973 Weight Loss 9 01-12-2007 08:22 PM
Does anyone here REALLY Understand? Samantha317 Depression 746 10-21-2005 10:33 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 01:59 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!