Diagnosed with lupus anticoagulant???

Hi,

I thought I would try and get some answers for my diagnosis. My GP did an ANA test and it came back negative for lupus and positive for RA.

Finally, I went to a Rheumatoid doctor and he did a specific test for Lupus anticougulant and it was positive. He didn't seem very concerned, he just wants to recheck later. He said to take low dose asprin 3X a day and only with food. I am not hungry at all, so I take the aspirin when I can. Also, the nerve conduction test was abnormal.

I am scheduled to have other tests soon. All of this should of been done a year ago, but I was just waiting for things to get better, but they didn't.

I apologize for my total lack of knowledge, but I am just starting to get proactive about all this. I saw a neurologist and he is the one that has me concerned. He said that with lupus anticoagulant there is a very high rate of strokes. This is very different from the "don't worry about it" attitude my rheumatoid doctor has.

So if any one out there knows about lupus anticoagulant or where I might be able to find good information on immune disorders, I would greatly appreciate it.

Thank you,

abby

[shev94]

hi, I also have the Lupus Anti-coagulant,I had numurous blood clots after my first child and was diagnosed then,before I was diagnosed I suffered from severe migranes (migraines) and seizures as well,the seizures have subsided,but I also now have symptoms that look like Lupus but have'nt been diagnosed with it ither. You should also see a hematologist as well,usually it's only when you have blood clots that they put you on coumadin. yes there is a high rate of strokes becasue of how sticky our blood is,being on aspirin is good.There is also a risk of heart attack and high blood pressure as well,I have recently develop high bp,I am 35 and I read it's when it usually start with LA patients. I am trying all the time to find answers on my own,read up more about it and educate yourself,it's important to stay on top of things without just relying on our doctors,I learned this myself.
Take care and share whatever info you come up with,I will do the same

[abby10]

Hi,

Thanks for the information. I am going to go back a get another LA test and hope that it comes back normal. I have high blood pressure on and off--I take 5mg norvasc. I've had a few seizures and bad migraines but am feeling so much better now.

I took some very "mean" and addictive pills to help me sleep with a doctors' prescription and have had very serious health problems soon after. These pills are called Xanax. Never take this drug!

I also had a very bad emotional time after losing a loved one, so I believe that my body just couldn't take the stress anymore.

I will never take coumadin, I've seen what this does to people and no thanks.

As I learn more I'll send you what I find out.

Thanks again,
abby

[SickMomma_PDX]

I'm positive for both LA and ACL, but my rheumatologist and hematologist both are unconcerned because I've never had a blood clot (that we're aware of). I did have a number of miscarriages, but because they were in the first trimester, they apparently don't "count" towards a diagnosis of Anti-Phospholipid Syndrome.

Apparently something like 10-20 percent of the population is positive on those tests and has no recognizable problem (like clots, strokes, etc.)

I was concerned at first and wondered why they didn't put me on a blood thinner Just In Case, but apparently coumadin is much more dangerous than the risk of a clot in someone who hasn't ever had one before. Or so my docs say ... and I'm hoping they're right!

Good luck, and I hope you get some answers and some good news!

[abby10]

I don't know...all it takes is one blood clot!

I think we both know that. I am going to have to start doing my homework regarding all this.

Gook luck to you too,

abby

[Jpitner]

I have lupus anticoagulant. I was diagnosed at age 29. I found out on a Friday(from a normal blood test) that I needed to take an aspirin daily on Tuesday I had a bloodclot  in my right arm. I was in hospital for 6 days to break up the clot. I was on coumadin for 1 year. If I have another clot i will be on blood thinners forever. I had 3 normal pregnancies with no complications. No miscarriages. I also have 5 pea size spots on my brain with no answers.I am now 32 and have had no more complications.