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Could this be lupus
Oct 21, 2003
Hi everyone! I've been real sick since Jan. Extreme fatigue, tingling in left left and on and off in arm, fever blisters, nauseated, migranes at least 5 times a week, my face breaks out in a itcy rash every now and then (not a full butterfly rash but just itchy spots), my legs and face break out if I've been out in the sun or a tanning bed, my bones hurt so bad there are some days I can't walk, muscles hurt every now and then like I've been working out with weights or something, very forgetful,dizzy, weak, all of the sudden will get very hot (like a hot flash), no energy, and many more but too much to list. Anyway, I finally was sent to a neuro. in Aug. he did some blood work and called me and told me a few things had come back borderline so at the beg. of Oct. he wanted me to go and get these tests done again. I went and picked up my blood work yesterday, because my neuro had an emergency and will be out of the office all week and I wanted to see what the results said instead of having to wait one more week. The anticardiolipin, IgM came back extremly high(the range was 0-9 and mine was 40), the Eos was also high, and the anti-dsDNA was 34 U/mL whatever that means. I'm not asking for a professional diagnosis, I'm just wondering if anyone could give me insight on this. There are days where I feel a little better than usual but I never feel great and the other days are so bad. If anyone could please give me some insight on this I sure would appreciate it. I know the neuro will be calling me next week but I was wanting to somewhat know what to expect before he called. Thanks so much for listening and sorry it was so long.
Hi football_mom!

Never apologize for typing too much! :) We are all here to "listen" and lots of people are on the same journey as you are! I have Lupus, and a blood disorder called Antiphospholipid Syndrome (APS). It sounds like you definitely have APS, the anticardiolipin test is certainly positive. By the way, that is not borderline positive! Do you get migraines? Have you had a stroke, miscarraige or trouble with clots in your legs? I posted about Antiphospholipid Syndrome in the Stroke forum, please go and look there. I think I put a post under the Lupus one too! It does sound like your Anti-DNA test was positive too. It depends on what measurement they use where you are, but I believe the cut off is 15 or so. I think that you have Lupus and Antiphospholipid Syndrome. If your Neurologist tries to tell you that you dont, you need to see a Rheumatologist that knows about Lupus AND Antiphospholipid Syndrome. I would advise you to get to a Rheumatologist as soon as possible :) I hope that your Neurologist knows about this Syndrome and about Lupus. He may want to retest your anticardiolipin after 3 more weeks, because they like to have 2 positive tests to make a true diagnosis of it. I am crossing my fingers that you get the right treatment started for you. Please go read in the stroke forum about Antiphospholipid Syndrome. I think I named it "Unexplained Stroke/TIA? Please read". Hope your feeling better soon, you can feel better with treatment. If you have any more questions, please don't hesitate to ask :) Take care!

~Angelic





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