Hi Sleepy......
I cannot stress this enough....You NEED TO BE TESTED for two tests which can cause TIA's and clots, often times go hand in hand with Lupus. The first blood test is the Beta 2 Glycoprotein test which is the gold standard test for APS, which causes TIA's & blood clots. The second test is to test for the MTHFR gene which can also cause clots & strokes. There is a specific anti-body that they look for which I cant remember the name of. I have BOTH of these and am on medications for APS & the MTHFR gene. MANY rheumy's and dr.s do not know about the Beta 2 glycoprotein blood test. They only go by the anti-cardioplin which is not specific for APS. My anti cardioplin was completely normal, yet my Beta 2 and the other test where 10 times what they should normally be. Please have these tests ran. ESPECIALLY the beta 2 glycoprotein test. It could save your life. If you have had a clot, you need to be on medication for it with APS. Please email me if I can be of any further help. I know more about APS then alot of dr.s do. I have had it for 7 years now.
Melissa

PS- APS is a different auto-immune disease than Lupus. Lupus doesnt cause clotting issues but it is very common for lupus people to have APS which is what causes the clots/strokes. Also, studies have shown that alot of woman who have multiple miscarraiges, strokes, heart attacks at a young age, have the MTHFR gene. This gene can also be common with people who have APS.
Please keep us posted
Melissa

Hey Melissa,
Thank you for this info. I wrote it all down and am going to call Drs on my next break to see if I've had these tests.
I will be reading on APS and MTHFR gene also. (looks like a naughty word:)
Is APS something that does not show on brain scans either?
Thanks again, Teisha

Hi Teisha,
APS will not show up on brain scans unless you have damadge from the TIA's or small clots in your brain. The scans will just show if you have any brain damage from the episodes. Some people have multiple TIA's from APS and have normal MRI's. The blood work plus the clotting episodes is what leads to the diagnosis. Your rheumy is the one who can do the Beta 2 test. Im not sure about where you can get the genetic test done. Really, if your APS test comes back positive, you will be treated for it so the genetic testing doesnt really matter. They really only tell people with the MTHFR gene (yes....it does sound like a naughty word!) to take a baby aspirin a day UNLESS they have clotted.
Please keep me posted as to what your dr. says about this test. I would be curious to know if he ran it already or if he even knows what it is... Also, even if it was run before, have the beta 2 run again. It is just like lupus bloodwork. It can be a hit or miss in some people. Could have been negative before and now its positive.
Hugs
Melissa

That is exactly what happen to me one min i was walking to the loo the next min i was flat on the floor could not feel my legs. I left it 2 weeks before i told my remmuy he went mad and admitted me for tests straight away.

Since that day i have constant pin nad needles in my feet that wont go away. I had 7 diffrent kinds of tests keep strong and they will figure out whats going on.

Ann

I SleepyT, I had a episode (?) I was at a event in June in Fl. I all of sudden got very hot sweaty, lightleadhed and very weak. I went back my son's (I was on vacation) and laid down on his cermic tile floor for 30 min, I felt better and then went the grandson's baseball game. 2 days later I had a a very bad stroke, Airlifted and all. The Dr's couldn't find any reason for my stroke they did every test availible. I had no plaque in any of my of veins or arteries so the chalked it up to "HORMONES"
I don't believe them. but I do think I had a TIA previous. It is good that you went to the Dr's . Something I didn't do. In hindsite, my can remember many episodes through the years that I think may have been TIA'S and I didn't know what they wwere.
I hope the helps. But continue to do what you we are doing and work with the DR'S
Hugs, Memieof3

This post and the comments following really highlight the way women deal with these kinds of health issues. "I didn't think much about it", "I laid down on the tile 'til it passed",
"I saw my doctor 2 weeks after the event" (I did the last one!)....It's almost like a compulsion we have not to make a fuss...rest and then get on with it. Are we all "wired" the same, or is it social conditioning? This should be of great concern, our stories highlight our behaviours....but are we changed?

Love to you all and thanks so much for your stories and your support! I love my Lupus Ladies.

Melissa,
You are a walking encyclopedia! Rheumy and MD have not ran those tests. I was shocked! Can not believe there are tests they haven't ran.
Ann and Memieof3,
You ladies should get these specific tests also. Then lets compare notes. We should get these as required testing when there is a TIA or a blood clot.
Earthwalker,
I believe it is social conditioning. We may be the fairer sex but we all know we're not the weakest. Also so many years of being treated like loons, everything being chalked up to 'hormones', as Memie said.

Hi Sleepy,
I had a strong feeling that the Beta 2 glycoproteing test was not ran on you. It is a test that MANY dr.'s dont even know about. It is specific got APS. For example, my anti-cardioplin has never been positive. This is the usualy test rheumy's run. My beta 2 test, on the other hand, was extremely elevated. The ONLY reason why I had this test run is because I went to a rheumy who is knowlegable about APS and picked up on some of my symptoms that are common with this auto-immune disease. Then, before I got pregnant, a bunch of other tests were ran on me and that is when they found the MTHFR gene which is also common for APS'rs to have and also causes clots. Your only problem now is that if you are on medications the Beta 2 glycoprotein test may not be accurate. The Genetic gene will be positive or negative no matter what you take. Also, there is another gene that causes clots, strokes, etc. Its called the Factor IV leiden (?) test.

Have any dr.s suggested putting you on a blood thinner? That would be the only added med you would need as the treatment for APS is the same in every other way as lupus.

I also advise anyone with Lupus to have the Beta 2 glycoprotein test done. It is common for lupies to also have APS. If you dont want to have any further testing, you can protect yourself by taking a baby aspirin every day.
Hugs to all,
Melissa