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Hi & welcome. Yes, it's possible to have lupus without a positive ANA. Lupus has distinct "subsets" into which some patients fall tidily, while others have symptoms that cross the subsets. Before continuing, you should read the sticky posts (permanent info posts) located right above the user threads, particularly the one on rashes and the one with the ACR criteria. (In the list below, I omitted the neonatal lupus subset because it affects only newborns.)

[LIST]
[*]In the discoid lupus ([B]DLE[/B]) subset, patients get discoid lesions that scar and/or depigment, plus possibly some fatigue & other milder issues. They meet fewer than 4 of the ACR criteria, and antinuclear labs are negative by definition. Although cosmetically disfiguring, it's the mildest subset. It's estimated that only 5-10% of patients who present with DLE progress to SLE.
[*]In the subacute cutaneous ([B]SCLE[/B]) subset, patients typically get one of the two SCLE rashes. They may meet fewer than 4, 4, or more than 4 of the ACR criteria. ANA may be negative or positive, and the ANA subtype you expect to see is anti-Ro. Patients are "eligible" for the same range of problems seen in SLE; some experts think they more often remain mild while others believe they face the same odds of severity as SLE patients.
[*]In systemic lupus ([B]SLE[/B]), the malar butterfly rash is the most definitive rash possible, but patients are actually "eligible" for the others, too (like discoid or SCLE lesions). Patients meet 4 or more of the ACR criteria. ANA is positive. This is "classic lupus", the form we think of when we hear the word. It may range from mild to life-threatening.
[/LIST]
I think it makes sense for you to see a rheumatologist. If any of your rashes are lupus-specific---like the recurring lesion on your scalp *or* the ones you get on your body---then you do have lupus to some degree. And if the rheum can't identify the rash you get on your body, then you should ALSO see a derm who's conversant with lupus rashes!

BTW, I learned the above the hard way, by having an SCLE rash that my local doctors (a rheum &+ many derms) didn't recognize. (I also got a single discoid scarring, plus once a widespread blistering rash that *may* have been a lupus bullous rash.) I believe my ANA stayed negative, which caused them NOT to test for anti-Ro or other ANA subtypes---which was a mistake! I had literally decades of headaches, pain, fatigue, GI problems, weight loss & hair loss, etc., then finally 8 years of rashes. Also low WBC and Vitamin D, plus some other anomalies. By the end, I was wildly photosensitive. I finally went to a teaching hospital & got answers in one month. (Dumb me. :eek:)

Let me know if this makes enough sense, and feel free to ask add'l questions. I'm glad you found us: we're good company, if I do say so myself. :D Main thing is to keep working on getting answers. Also, please know that lupus is eminently treatable, and that if you do get the diagnosis, your life will change (meds, checkups, sun avoidance, etc.) but that things should improve. Sending warm wishes & looking forward to hearing more, Vee
[QUOTE=VeeJ;5356799]Hi & welcome. Yes, it's possible to have lupus without a positive ANA. Lupus has distinct "subsets" into which some patients fall tidily, while others have symptoms that cross the subsets. Before continuing, you should read the sticky posts (permanent info posts) located right above the user threads, particularly the one on rashes and the one with the ACR criteria. (In the list below, I omitted the neonatal lupus subset because it affects only newborns.)

[LIST]
[*]In the discoid lupus ([B]DLE[/B]) subset, patients get discoid lesions that scar and/or depigment, plus possibly some fatigue & other milder issues. They meet fewer than 4 of the ACR criteria, and antinuclear labs are negative by definition. Although cosmetically disfiguring, it's the mildest subset. It's estimated that only 5-10% of patients who present with DLE progress to SLE.
[*]In the subacute cutaneous ([B]SCLE[/B]) subset, patients typically get one of the two SCLE rashes. They may meet fewer than 4, 4, or more than 4 of the ACR criteria. ANA may be negative or positive, and the ANA subtype you expect to see is anti-Ro. Patients are "eligible" for the same range of problems seen in SLE; some experts think they more often remain mild while others believe they face the same odds of severity as SLE patients.
[*]In systemic lupus ([B]SLE[/B]), the malar butterfly rash is the most definitive rash possible, but patients are actually "eligible" for the others, too (like discoid or SCLE lesions). Patients meet 4 or more of the ACR criteria. ANA is positive. This is "classic lupus", the form we think of when we hear the word. It may range from mild to life-threatening.
[/LIST]
I think it makes sense for you to see a rheumatologist. If any of your rashes are lupus-specific---like the recurring lesion on your scalp *or* the ones you get on your body---then you do have lupus to some degree. And if the rheum can't identify the rash you get on your body, then you should ALSO see a derm who's conversant with lupus rashes!

BTW, I learned the above the hard way, by having an SCLE rash that my local doctors (a rheum &+ many derms) didn't recognize. (I also got a single discoid scarring, plus once a widespread blistering rash that *may* have been a lupus bullous rash.) I believe my ANA stayed negative, which caused them NOT to test for anti-Ro or other ANA subtypes---which was a mistake! I had literally decades of headaches, pain, fatigue, GI problems, weight loss & hair loss, etc., then finally 8 years of rashes. Also low WBC and Vitamin D, plus some other anomalies. By the end, I was wildly photosensitive. I finally went to a teaching hospital & got answers in one month. (Dumb me. :eek:)

Let me know if this makes enough sense, and feel free to ask add'l questions. I'm glad you found us: we're good company, if I do say so myself. :D Main thing is to keep working on getting answers. Also, please know that lupus is eminently treatable, and that if you do get the diagnosis, your life will change (meds, checkups, sun avoidance, etc.) but that things should improve. Sending warm wishes & looking forward to hearing more, Vee[/QUOTE]
I tried to tell my doctor but she wouldn't listen. So I found a new doctor. He sent me for labs on Friday April 10th and here's all the labs he wants. Ana , dsdna, anti smi , anti ro, anti lag, anti phospholipid ab, complete level on all ( labs will only say negative here and not show the number if there is one that's low)
Also sed rate, thyroxine tsh 3rd gen and C-reactive protein and a urinalysis.
I think he has covered me.

I just thought of something when I was a little girl I always got these huge clear blisters across my chest and under my arms and when they would pop they looked like a burn, even though they were not.

The dermatologist sent me for lab work and on the lab work she wanted a tb test and a hepatitis. I got my labs from quest and the results for those were not on there. And when she told me to make an appointment she said I will discuss the labs with you then and the biopsy of the lesion till then don't worry . I said to her if they came back bad would she call and she said I will see you in a month. So I see her today.
Thanks for your reply.





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