I've had Lupus-like symptoms for about 3 years now, and a persistent discoid-like rash on my fingers, forearms and calves of my legs, with recent involvement with the chest. I've got the malar rash on my face as well. A series of blood tests recently showed that I am positive for Cardiolipin IGM antibodies, while all other blood work was pretty normal. While I had a low score on the ANA test, 17 (range 0-120 U), do you think that I have Lupus or just Antiphospholipid Syndrome? I have all the system-wide symptoms of Lupus and/or Mixed Connective Tissue Disease and supposed to re-test again in a few weeks. I'm just wondering, what is the significance of this positive test, and MOST important, should I be on low-dose aspirin while waiting to re-test? My score on the Cardiolipin Antibody was 28 (range 0-19 MPL) ???
Thanks for the reply :) No, my doctor hasn't said anything. He said come back in 3 months to re-test. But, meanwhile, I'm worried sick about getting blood clots before I go back in 3 months. I'm seriously considering going back next week and at least getting on aspirin or something. My mom died at 45 with cancer and her illness started out with blood clots, including in her lungs!
So, I'm nervous about the blood clotting. Any info you want to provide me with would be wonderful! I appreciate your reply. THANK YOU!
Hi there. I'm 42. No, thus far, I don't have any swelling of anything anywhere. And, I'm kind of a "hyperactive" person, and thus don't sit still too long, except to do my job, which is sitting at the computer all day. But, I get up and move around all the time as I don't sit still well :)
But, I do think that this weekend, I'm gonna start taking the Baby Aspirins. I haven't taken Aspirin in years and years and want to take one when my husband is around, just to make sure I don't have any kind of reaction. This won't hurt a thing and will maybe give me some piece of mind.
I did get so nervous yesterday, that I called my Doctor, and he actually called me back :) He said, that with a score that low, that he didn't feel panicky about it. He also said, as I asked, that he didn't think I needed to come into him and get a "clotting" test done as my score was not enough to bother him. He said I could take the Aspirin if I wanted, but it was not necessary.
So, I feel better. But, what does he know as he's not able to see what's going on with my blood! So, even though he was some comfort, I've still got that "what if" in the back of my mind, because of what I saw happen to my mom.
But, sounds like you have a REAL problem with it! I sure hope mine was just a flub-up in the blood work or something. I've had lots of ANA tests in the past, and they were all negative. This is the only time a doctor has ever ordered the Cardiolipin Antibody test on me (and the others) before. While I'm glad he did, in hopes to predict a future problem, now all I can do is worry! ha!ha! Darned if you do, and darned if you don't :)
I hope you get along ok though. I can imagine how you must feel knowing that you definitely have a problem and not knowing if you'll have a catastrophe at any moment. That would run me nuts!
Don't forget the "holistic" approach to healing yourself as well, from the inside out. The diet and what you eat can make a major difference in your health. I've read where something as simple as eating Gluten Free can do wonders for Lupus folks, because it's an anti-inflammatory way of eating. I tried it and only made it a week, because I'm a southern gal and it's hard to stop eating gluten! But, I did feel MUCH better when not eating it. I'm just gonna cruise along and see what happens as I may go back to that and try to stick with it this time. I've noticed my stomach is swollen since I quit eating Gluten Free and don't feel good. But, that could be my menstrual period coming on as well.
But, I sure "feel" for you and I sure hope you get along ok. THANKS so much for your comments. It's nice to have somebody to talk to!!!
Good evening, I want to tell you thank you for just being who you are and what you have, I kniw that might seem a we bit strange yet it is very seldom do I find someone who has anticardiolipid Antibodies no matter how bad it is for that person. I been dealling withthtis we figure since I was very young yet then they just called it growing pains.
It wasn't till I was 27 that I got a name for it and I had to go threw alot of doctors before I found one who knew something,I knew something was wrong with my legs cause just going up 3 steps I had to pull myself up and I had to give up hiking and bike riding, the last thing I had to give up was wimming cause my legs would hold me down under the water.
It seems like I have been threw enough in my life (which I don't think you will have to) One time in the hospital I had 4 very small blood clots go threw my heart at the same time and look I made it , heck I didn't even know it happen except I was coughing alot.
The way I look at my illness is I am the way I am so I can assure people that if I can go threw it so can they.
Can you believe I was on an airplaine and it was landing and I had an arotic anurysm break..whoohoo and I'm still alive
One night at home my right kidney blew up, had surgery , in a coma for months and quess what? I'm alive
With my family I am the last one still alive at the age of 49, my goal has always been to make it to 50..ya got any idea for a goal for me to make it till 80?
4 people in my family died from luekemia, my sister, mom , grandmother and one aunt. I had a sister who was really healthy and she was on the sand dunes 4 wheeling and fell and broke her neck, it can be anything yet I don't think about it too much unless a spirt comes and bugs me..lmbo.
I watch my diet very well cause i've been a diabedic since I was 7.
Like I said hun don't worry too much about having blood clots, just once in awhile check behind your knees and your upper arms if you notice any swelling or a lump in those areas call your doc.
When I had the anurysm I woke up and it looked like I was in a fire I had gangrene all the way up to my knees and up to my elbows only I didn't have it was on my right pinky. it took 2 and a half year yet I kept not only both feet, legs, arms and my hands.
So see sweetie use with this Antibody can get threw anything, I find it a challenge and I love challenges.
Take care and smile, I'm here and can understand anything your going threw.
Wow! I can't even imagine what you've been through! And still alive! That's amazing! You're so lucky to have made it through all that stuff!
Yes, like you, all my family is dead. I really only knew my real mom and my real grandfather. I just found out about 4 years ago my mom was adopted, and thus the family that I thought was my family, was not my family. My mom was already dead when I found this out. Poor mom, if she had only known, her life might have been so much better.
I don't have any kids. I only have my husband, and we're both hermits :) We do have 3 fat cats that we rescued and they're all 3 just full of love, and we love them very much. I'd slit somebody's throat over my cats! ha!ha!
We do have casual friends and some neighbors that just moved in a few months ago that we're getting to be good friends with. I just don't make friends too easy as I'm always on guard because I find that "people" are evil :) I prefer the "fur people". But, we're getting to be less hermits now I guess.
I know that my Antiphospholipid score is low, but it's still scary. But, yesterday, I was preparing a 13-pound Beef Brisket for smoking today (trimming off the fat) and I slipped and whacked my finger with the knife, and I bled like a stuck hog! So, I'm hoping that's a good sign that I'm not a "clotter". It made me feel better to see that, and it was such a small cut too. Hope that the runnyness of the blood means good stuff!
I know that before my mom died, they had found that she had Lupus. And, we used to tease her all the time for popping so many aspirins every day. Well, now we know, that because she had Anitphospholipid with her Lupus, she was self-medicating and didn't even know it. I'm not sure if the blood clots she had that probably killed her were from the Lupus or the Cancer, as she had both; but she died an awfully painful death as I couldn't even stand to watch.
I sat out in the sun for 30 minutes yesterday and could feel it on my skin. I am experimenting to see if I get worse or better, as you know I have the bad skin rash on my face, fingers, forearms, chest and calves of my legs. Today, I'm smoking that Beef Brisket (I'm a Southern Gal that can cook and love my real BBQ) and will be out in it again. So, we'll see what happens!
My husband is up ... better go and check on him. But, THANKS for talking. We don't have to stop talking :) You take care and have a GREAT day and talk soon!!!
This is going to sound weird yet I know you will 100% understand,, whoohooo you cut your finger and it bleed. Congrats!!!!!
I'm in the northwest so we have alot of fresh seafood and fish. I was just telling my hubby if he can really believe we been married for over 30 yrs? He gruntted ..hahahahaha
I had a trip to my regular doc today, I live in the country so it is 62 miles one way to go see him I had to do a UA cause he think I might have a kidney infection, let pray and hope I don't, I'll find out Wednesday afternoon when I see my kidney doc, I'm have gotten to the point where I can't stand doctors.
You sound like a great cook, my idea of cooking is unwrap something and throw it in the micro hahahaha..
Well, I SURE HOPE you do not have a kidney infection for sure! That would be not only a pain, but bad!
We live in the country too. We live in a very small town; but they do have a bank and post office and meat market. But, it's like 16 miles to a big town where Walmart and all those places are at. We go there to get all our major stuff.
Yes, I love to cook! I'm a southern gal and that's what all us women are taught from an early age is how to cook everything from scratch. My smoked Beef Brisket was a BIG hit yesterday and not a morsel of it is left! It was 13-pounds of meat and I practically fed the whole town and not a smidgeon of it is left! I think next time, I'm going to smoke a Boston Butt as I love pork.
I have a big pot of Cheesy Beef Vegetable Soup cooking now. We just went to the meat market and got some fresh ground beef and making a huge pot of soup so we can feed us and my husband's son and girlfriend, and probably some to our neighbors, who just love my cooking :) I think I'm either gonna make a Peanut Butter Pie, Pineapple Pie or Crumb Cake too. Can't decide which one yet :)
Well, you TRY to have a good day and will talk soon. Gotta gret crackin' on some vittles :) ha!ha!
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