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Old 10-21-2003, 05:11 AM   #1
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football_mom HB User
Question could this be lupus

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.

 
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Old 10-21-2003, 01:20 PM   #2
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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

 
Old 10-21-2003, 01:23 PM   #3
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Also, have you had an MRI of your brain? This is a good thing to have done too, to make sure that you have no clots going on. I do not want to scare you here, just give you an idea of what the Neurologist might say. He may try and say that you have MS, but I doubt that with the APS test and the Lupus Anti-dna being positive Take care and please don't be afraid. Empowerment is the key in this!

~Angelic

 
Old 10-21-2003, 08:17 PM   #4
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Hi,

I have lupus and suggest that you stay out of the sun and out of tanning beds until you have a probable diagnosis (autoimmune diseases can be hard to diagnose until time has passed and your symptoms and medical tests are all taken together). Lupus symptoms worsen with exposure to the sun. After a time, they lessen again if you stay out of the sun.

Good luck! Barbara
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Old 10-22-2003, 05:57 AM   #5
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Thank you all for your response. To answer some of your questions, yes I do have extreme miagranes at least 5 times a week and I had one miscarriage a couple of years ago. I ended up having to have a hyst. in May of last year. When I do get out in the sun or in a tanning bed I break out, especially my legs and face. I had a mri done in early April but at that time nothing showed up, but also at that time I wasn't as bad as I am today. Thanks again for your input, you've been great help.

 
Old 10-22-2003, 12:59 PM   #6
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Hi again!

It really sounds like you have Antiphospholipid Syndrome and need to see a Rheumatologist that specializes in it. You do not want to clot, i promise! It is not fun stuff. I agree with Barbara that you should stay out of the sun if you are getting rashes, those could be related to Lupus. The Anti-DNA I am not sure about. It depends what the range was, can you tell me what it says? Every lab is different, but up here our range is 0-15. If you let me know then i can help ya out with that. I hope that your Neurologist will help you out! If not, you need to find another one that will, these are serious disorders when they are acting up. Take care!!

~Angelic

 
Old 10-22-2003, 04:07 PM   #7
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Hello
The anti cardiolipin antibody tests can be out of range for a number of reasons especially certain infectious diseases.

Two tests are necessary - the ACA's and the lupus anticoagulant and both should be tested for at least six weeks apart.
If either is positive then the results are diagnostically important. There is a variety of other tests that can ascertain if an autoimmune disease process is the cause.

You may need to find a lupus expert doctor as ignorance about APS is widespread.

Good Luck
Lally

 
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